Social worker and endometriosis patient advocate Casey Berna joins host Dr. Charis Chambers to discuss how women with period health issues often cope with their symptoms rather than seeking help, and how you can break the coping cycle.
Social worker and endometriosis patient advocate Casey Berna joins host Dr. Charis Chambers to discuss how women with period health issues often cope with their symptoms rather than seeking help, and how you can break the coping cycle.
Tales from the Uterus
Episode 2: She Copes Therefore She Is
Dr. Charis
Hello, hello, and welcome to Tales from the Uterus. Today's episode's title is She Copes, Therefore She Is. My name is Dr. Charis Chambers. I'm a board-certified OB-GYN and founder of the Period Doctor, which can be found on all social media platforms, where I educate menstruators about their reproductive health.
I do want to start this episode with a bit of a disclaimer to let you guys know that this podcast is for US listeners only and is intended to be listened to as it was originally produced by Pfizer and Sumitomo Pharma America. This podcast has been paid for by Pfizer and Sumitomo Pharma America and the participants have been paid by Pfizer and Sumitomo Pharma America for their time. The information provided is for educational purposes only and is not intended to replace discussions with a healthcare provider. This promotional activity is not certified for continuing medical education.
Session 1 – Period Health Issues That Affect Menstruators
Now that we understand all of that, welcome! So, this episode is possibly one of my favorites. I love the opportunity to really talk about how period health issues affect menstruators. I do want to start by discussing the normal versus abnormal. So, there's certain period health symptoms that are normal and then there's those that really, lean into the abnormal. So that can be our severe pain and cramping and even like our heavy menstrual bleeding. Heavy menstrual bleeding means or is defined as your period lasting longer than seven days or you losing more blood than is typical during menstruation. I also want to take this time to highlight some important period conditions.
To start, endometriosis. So, endometriosis is probably more accurately described as a pain condition. Endometriosis is when that uterine lining or cells that are similar and kind of behave similarly to that uterine lining are found outside of the uterus. And it's not a matter of distance or where they are, they can be found just on the outside of the uterus, on the ovary, on the fallopian tubes. Wherever they are found, it is abnormal for them to be there, and they bleed and cause pain and inflammation and scarring wherever they are. Endometriosis can be a very debilitating condition and I'm super excited that we have the opportunity to talk about it in today's podcast.
There's also uterine fibroids. Uterine fibroids are essentially non-cancerous growths that come from the muscle layer of the uterus. Their symptoms and how they cause symptoms and how they affect you have to do entirely with their size and their location.
And then we also have premenstrual syndrome. Premenstrual syndrome is a syndrome where there's a combination of physical and emotional or behavioral symptoms that are correlated to your period. They typically start just before the period. And this is similar to premenstrual dysphoric disorder, which is the much more severe form of PMS, that is largely characterized by severely impaired professional and personal lives. So now that we know about these period conditions, I feel like we can have a much more informed discussion on the true topic at hand today, which is how menstruators often feel that we have no choice but to cope with these period symptoms.
So, to start I'd like to welcome Casey Berna. Casey has worked as a social worker and patient advocate in the endometriosis, infertility and pregnancy loss community for the past decade and was inspired by her own experience as a patient to work with these populations. Casey, welcome.
Session 2 – Coping is a Universal Experience
Casey Berna
Goodness, I am so very grateful to be with you here today. And I feel like you were just reading off highlights of my own medical charts. So, I'm really grateful to be here to talk about something that has impacted me personally and that I've really dedicated a lot of my life to, um, over the past few years.
Dr. Charis
And I'm equally grateful to talk with you about this. I do want to highlight that we are going to be referencing you as an expert from the social worker and patient advocate roles and also as a patient. And so, I thank you for your willingness to wear a few hats during this conversation. But I do feel like it's going to be an enriching, experience for both of us. So, to start, you know, and I mentioned this, most menstruators have had to cope with their period health issues, and this includes all sorts of people. Including highly successful people. Including people that help those people. And so, I want to invite you to share your story and your experience with having to cope with your symptoms.
Casey Berna
Absolutely. I feel like my own symptoms started when I was probably 15 years old, and I can remember my periods being so painful and so heavy that, doing school activities, doing homework, and participating fully in life was really difficult. But again, I was told to sort of keep going and that it's nothing and just rest. And like you said, um, just keep going. And that lasted for many, many years. And like a lot of other endometriosis patients, it took me a long time to get diagnosed as I experienced a delay in diagnosis. And all through at that time, I just kept hearing the message that maybe I had a low pain tolerance or that it was normal and that I just had to carry on.
And that went on through college where my pain was increasing. I had a lot of different stomach issues, ovulation pain, fatigue, nausea. And I went to so many different doctors who would diagnose me with irritable bowel syndrome or anxiety, or that I had a low pain tolerance.
And I really didn't know any better. And it wasn't until really my mid-to-late 20s that I understood the extent of my endometriosis and that I had endometriosis at all. And unfortunately, so many patients that I work with they have the same experience before seeing a specialist and truly understanding what is going on with their bodies. And they just have to cope and you know, just sort of keep going throughout the pain.
Dr. Charis
That's so tough when you kind of vocalize your issues and the pain you're having and it's turned back on you and they say, “well, maybe you have a low pain tolerance.” Gosh, I really dislike that because it one, it really perpetuates the thought that something's wrong with you and that you're just not capable of pushing through enough. That really hurts my feelings for you. Knowing and feeling at a very young age that something's wrong and being told time and time again that something else or it's not this. And you know, that is super challenging. I know that your patients are so grateful to have an advocate like you who truly understands what it feels like to be in that role.
I do want to highlight that a lot of this, the idea around coping and all of this is due in part to the stigma that sets the precedence for menstruators that we just have to deal with it. Uh, and this makes me think of episode one of our podcast, where we really stick it to stigma. We dive deeply into period stigma, the origins, the consequences, and ways, that we can hopefully overcome it. And so, you know, stigma plays a big role in why we feel the need to be strong and to cope in the way we do.
Casey Berna
Yeah, absolutely there is such a stigma with menstruation, which I think is a huge obstacle to getting care that one needs. I think in different cultures, I've heard from patients, different cultures don't really like talking about menstruation or don't feel free to talk about menstruation. It's almost taboo to talk about these things. And I think another barrier to care is that often, a person's experience with their period and if it's painful, they often go to other people in their family to ask about their experience with their period and things like endometriosis can be genetically linked and can be passed down.
So, it becomes commonplace, like my own mother used to pass out on the subways with her period and was like, “oh yes, painful periods are just normal.” So, I think there are so many, different barriers to care and it's absolutely multifaceted
Dr. Charis
I totally agree with that. You know, you brought up such a good point when you're just thinking about your family structure. You know, someone who, when we hear passes out on the subway, I mean, my heart stops, it hurts. It's like, oh my God, that is dangerous, that is scary. There's so many words to describe that. Generations before me have pushed through. They've bled and kept going. They've been in pain and kept going. And this is my banner to just bear and that's tough. But when you've felt like that's normal, and I think that speaks to your mom's experience, like that was normal for her. It then says that, that's the frame of reference that she's going to use to guide you, and so you're taught that it's normal.
And you know, you mentioned if it's common, does that mean normal? And I really love to kind of distinguish those two. Common and normal, not the same. Common within an abnormal setting, abnormality is common, right? And so really getting outside of just our nuclear home and making sure we're speaking with experts, certainly is one of the ways to combat that.
Session 3 – Understanding the “To Cope is to Be Strong” Mentality
Dr. Charis
So, Casey, you know, I want to unpack this notion that to cope is to be strong. And I really want to get your idea on where does this come from? Why do we feel like we need to be busy and be strong and women seem to be more prone than men to feeling that we have to cope with these health issues. But we say that and it's normalized. It's almost accepted. So why do we feel that way, especially in the workplace, especially when we're earning, you know, money for our livelihood, why do we feel the need to push through? Why is that something that's a badge of honor? Why do we feel like that's something to be proud of?
Casey Berna
I don't know, I feel like there's, um, this pressure and often it could be on women too, to just go along with the pain, to suffer in silence and to act as if nothing has happened. Often myself, I've had to learn that my pain is real, my diseases are real, like what is happening is real. You know, endometriosis often impacts the bowels, the bladder, even the diaphragm you mentioned that it exists outside the uterus. And it's a very painful, difficult disease to have. So just sort of what I've had to work on is it's okay to rest. I don't need to, um, you know, work through like heavy bleeding or, you know, it's okay to put my feet up. It's okay to be gentle on myself. And that's often what I have to unpack with patients.
And I think part of that is the lack of understanding and awareness, for the disease. I feel like there's sort of a competency, even say like if your neighbor has the flu, you know what to do, you bring soup, you check in on them. But often when it comes to reproductive health issues or things that have to do with stigma, folks are completely unaware of what to do to help and often feel shy about helping, or don't even know that there is a need to help and support and intervene. So, I think it's part that patients have to understand to be gentle with themselves, even if it's not recognized. And then I know in the advocacy community, we're working on education and awareness to say, hey, this is really serious and it's really important to be gentle on others and support others who are struggling with these health issues.
Dr. Charis
I love what you said there. It's not even that we just feel like we have to push through, you know, like for internal reasons. It can be that we actually just have to push through because we don't have the resources. We don't have the supporters. People aren't listening to us. And when we do express our needs, they have no idea what to do with them. So, then we're like, “oh, now I have to teach you as well“, because there isn't enough discussion about periods. You know, you're right. If someone says they have the flu, “oh, probably fever, maybe some nausea, maybe some pain”, you know, all of those things, the compassion, but when it comes to reproductive health, if it has anything to do with the uterus, it's like, “hey, all pain deserves to be treated, unless it's related to the uterus. All bleeding deserves attention, you know, unless it's related to the uterus.”
And there's, you know, there's some fact there in that there's physiology as in there's an expected portion of the bleeding, there's an expected portion of cramping, but, you know, the compassion is what wavers and that's what's really different. So, another question is why do we feel that women may be more prone to this than men, to feeling like they have to cope with health issues, especially in the workplace? What are your thoughts on that?
Casey Berna
It is so harmful. It's such a harmful part of our culture and our society at large that when we're not feeling well, that when we're in distress, and I absolutely feel that folks dealing with endometriosis and all of those things are in physical crisis and often emotional crisis because it impacts every aspect of a person's life. So, the fact that they're expected to go along and get along like nothing at all is happening, um, is really a travesty and I think adds to the trauma of the whole situation. And I think it has to do with stigma which we've talked about and also just this general misunderstanding and lack of awareness around, reproductive health and around, diseases that are linked to menstruation.
There's awareness if someone has the flu, then coworkers are like, “oh, what can I do? Can we send you soup? Um, please don't come in, take as much time as you need.” But for things surrounding reproductive health, um, it's really not understood and there's no space given.
Dr. Charis
Yeah, I agree with that. There's a general compassion and empathy for the flu. And it isn't something that we're like, I have the flu, no one really whispers that. They say, “I have the flu.” And all that comes along with it, we know you might be throwing up, you might have terrible upset stomach, you might have diarrhea, you might have aches and fevers, and all these things that are not particularly comfortable to talk about. But it's grouped under the name of the flu and that's an acceptable thing to discuss. It's something that's worthy of compassion and time off and no other questions are asked. But when it comes to the uterus.
Casey Berna
Yes, yes, So, there's a lack of understanding in the culture and greater society. For example, even a colonoscopy, I feel like if you say, I have a colonoscopy, I have to prep the day before, people are like, “whoa, all right, don't come in. Take the time you need, and I hope it goes well.” And yet for endometriosis, patients have diarrhea, bladder issues, intense pain, intense cramping, bleeding, all of these things and yet there's no space or compassion or empathy for people going through that. And it's really, really difficult. It's a burden, absolutely.
And I think really there is this thing about menstruation where people are embarrassed or uncomfortable to say, I have my period and it's painful when, you know, often people dismiss it, because not everyone understands the pain. It's like, well, I come in during my period, so everyone should come in during their period. So, this lack of empathy and compassion and just because you don't understand doesn't mean it doesn't exist. And I think in general in society, there's a great quote, um, by Lily Tomlin that I remember seeing. And I always remember this quote, “even if you win the rat race, you're still a rat.” And I think there's like this pressure in society to go, go, go. You know, it's almost a badge of honor if you, have an injury and take less time or, you know, just the whole idea that taking care of yourself and resting and healing isn't always valued in our society or mental health care or physical health care. And I think that's a problem, especially for those with chronic illnesses or reproductive health issues.
Dr. Charis
Yeah, and you know, it is a problem. I completely agree with that. And it needs to be changed. And I do think you brought up a good point. Sometimes the people that are creating this environment or perpetuating it are menstruators who are saying, well, my period isn't that bad, but it's understanding that periods are different for everyone. You know, your mild period, you know, is a blessing. And you are just so lucky to have that. I'm so happy for you. But for someone else, there's a severe period.
They have a pain condition, a period condition, that requires them to need time off, that requires them to take pain medicine. So that's not a sign of weakness, it's a sign of different needs. And when we can really acknowledge that people have different needs and we can really take into consideration different lived experiences, that's how you get true like equity, as in I'm giving you an equal opportunity to succeed according to what is necessary for you to do so.
Now, we talk about changing this mentality, so is there a way that you try to shift your patient's focus and say, “actually, this is worth celebrating? I'm proud of you for saying you need time off or for taking that time off or prioritizing your health.” Is there some guidance that you give in shifting that narrative and shifting that mentality?
Casey Berna
Absolutely, and I think the first step is educating yourself. If you're not feeling well, go to doctors and sometimes you may have to go to a few different doctors to understand what is going on who will compassionately, uh, take your symptoms seriously and to refer you to other specialists. And I think once you're able to get a diagnosis and put in place a multidisciplinary team, I think taking time to grieve and really just understand that you have a chronic illness. And I know that was hard for me that I have endometriosis. And when I have my period, it's really hard and I need to rest, and I can't do as much. And that doesn't make me less than it doesn't make me less of a person or less strong. It makes me a smart person and a person who's prioritizing myself and my own physical and emotional needs.
I think a big thing too is in mental health care, we talk about breaking generational trauma. I feel like I want to start a trend of breaking menstrual trauma. And, you know, as you educate folks, make sure that in the next generation, if they see their child suffering with these things, to take it seriously, and to get them the care they need and to not dismiss it or diminish their pain and to make sure that they're plugged into resources. And I think that is a big thing too, in terms of coping. Um, it could be so isolating. We talked about the stigma and talking about these very personal things, and it can be extremely isolating. So, connecting with groups, finding your people is so very important and that also is a huge part of coping.
Dr. Charis
Yes, I do want to reiterate, there are people for every person. Like, there is a group for you. You can find a group that speaks your language, where you don't feel like you have to explain yourself. You can find a group that speaks specifically to the areas of intersectionality in which you fall. That is super important, and you are deserving of support. Another thing that you mentioned, kind of this falls under just setting expectations for those who need support and prioritizing that and maybe having policies and really having menstrual-friendly workplaces that say when someone needs a period-related break or something like that or time off or support, this is what we have in line for them. You know? There's maternity leave, there's an expectation. Hey, people get pregnant, people get their period.
You know, there is, we really need to normalize this conversation and have an action plan. And that's how you say, in this place, we care about you. And it's okay to care about yourself. It's okay to prioritize your health. It's like inviting people to really do that. That's just one thing I wanted to add there.
Casey Berna
Yes, and there are other countries that are doing that, that you get time off every month for menstrual leave. And I would love to have that here in the United States. It would be incredible.
Session 4 – Breaking the Coping Cycle
Dr. Charis
Absolutely. That would be exceptional. I think we've got a few steps to get through before we get there, but I don't think that is an impossibility, especially with how people are advocating for themselves, and especially the younger generation really taking that charge. I do want to transition into, we kind of touched on this already, but breaking the coping cycle. And you brought this up.
And I really liked that you brought up sometimes, or it was hard for you to really accept that you have a chronic condition, you have a chronic illness. And that's a big part of celebrating and getting folks to say it's okay to prioritize my health. The first step is honesty. Can we talk about how it's important to start with being honest about the challenges we're having? Do you mind kind of digging a little deeper there?
Casey Berna
Absolutely. I can remember going through like a very heavy menstrual cycle and just being in bed and just the bleeding was relentless. And I can remember talking to my husband and he's like, this is a lot, you know, are you okay? And, you know, it was really a hard moment of saying that I can't, like, this is really difficult, and I don't know if I could do this anymore. This is really impacting so much of my life, and really making the hard decision to see a specialist and, you know, talking about a hysterectomy before the age of 40, and just really coming to terms with, having a history of endometriosis and fibroids and really what that meant. And there's a sadness to that because I think we all want to be healthy, and we all want to do all the things. And then when it feels like your body's not cooperating, it is absolutely devastating. So, and I work with a lot of patients too. There's just a lot of grieving that comes with it. And understanding your limitations, but then also with grieving, you know, you go through all the stages of grief, like they talk about, and then the end is acceptance and saying, okay, like I do have this chronic illness, but I also am resilient, and I have a lot of strengths and there are things I can do. And connecting with others in the community is so important for that because it can be so uplifting and also so nurturing to be with others who understand.
Dr. Charis
Yeah, so it sounds like, you know, sometimes we cope to avoid that sadness, to avoid confronting that truth of having a difficult diagnosis or potentially needing a hysterectomy. It's like, I don't want to deal with that, so I'm just going to cope. But the truth is you're still dealing with the symptoms. You're still pushing through. It's just kind of choosing your path. And they're both hard. I'm glad you highlighted it. It's not like there's some easy way out. Coping isn't easy, and facing it isn't easy but the one that's most productive is definitely facing it and prioritizing your health.
And I think sometimes people think acceptance is just laying down and taking it, and that's not it. Acceptance can be so motivating and inspiring, and it allows you to actually have the opportunity to say, what am I going to do that's productive?
So, Casey, you know, we reiterated that it's important to prioritize our health. Sometimes that starts with us accepting a few things about ourselves first to get to that point. And then people would say, well, where do we start? Where do you start with prioritizing your health? And I obviously am a little biased. I always say start by scheduling your annual primary care appointment and OB/GYN appointments. Whether you are in crisis or not, you need them and so they're an easy place in my opinion to start. What about you? Do you have any thoughts on where people can start when it comes to prioritizing their health? Do you have, um, any tips or tricks when it comes to prioritizing your annual appointments?
Casey Berna
Absolutely. I think just being mindful, maybe setting a calendar and just reminders saying like, hey, every and trying to do it the same time every year, I also think is really helpful. And obviously for insurance companies to pay for it, you often have to be mindful of when you've had your last appointment. Often going to the doctor can bring trauma and can bring a lot of distress. So, I think it can be hard for some people to make those appointments, but yet again, like with chronic illnesses, often, it just makes it all the more important. So, I think, you know, just having a calendar and putting a reminder is pretty important.
Dr. Charis
I totally agree and you know I want to emphasize this is in no way suggesting that you need to wait until your annual appointment to voice concerns, right? It's important to be proactive and communicate any period health concerns that you're experiencing in that moment. You don't have to wait six months. I definitely have patients say, I say, well why did you wait so long? They're like, “oh I had an appointment in two months.” Two months? Like no, that's too long. But that also you know boils down to and I guess goes back to us saying it's important to know when your period symptoms are not normal. And it's important to have that talk track and be prepared to say, like, know how you're going to ask your provider about improving them. Sometimes I practice. I practice before I go into the office. I write down my questions and say, I'm going to say this and I'm going to say this. Because in the moment, it's easy to forget or it's easy to not find the wording. Are there any things that you do to make sure that you're showing up in a proactive and engaged way as a patient?
Casey Berna
Absolutely. I think writing down all your symptoms is really important. And, you know, If you suspect you have endometriosis, fibroids, any of the things that we're chatting about today, there are a lot of incredible patient advocacy groups and groups online where they even have lists you can print out that give you questions to ask your doctor, symptom lists that, you know, you could check off which symptoms you're experiencing and bring that in. There's another really great private group that Endo Black runs like on Facebook where folks can come and like express their symptoms within a community that they feel safe. And Lauren Kornegay runs that and that organization. And Les Henderson runs Endo Queer. And they have an amazing, again, a private Facebook group because we said these symptoms are often hard to talk about.
So, in the Endo Queer private book, there are folks who are trans, who are non-binary, and there are even more things to consider when going to your provider. And there are outlines of questions and resources and support from a community. So, I definitely think if you feel a little lost or overwhelmed, there are fantastic endometriosis nonprofits and resources online where you can get printouts and questions. And also having someone come with you can also be really important. And they can help you ask questions or write down because sometimes this can be incredibly overwhelming.
Dr. Charis
Totally agree. Building that support system can really make you feel empowered. It can give you that confidence when you're walking into the doctor's office. Like it's not just me, I'm walking in with a community, with a sisterhood, with a group of folks who are beside me and understanding what I'm going through. Or even just a supportive partner who's going to listen with another set of ears, um, remind you to ask that one question. You know, so being thoughtful about creating that support system. And they don't always have to look the same.
You know, sometimes it's mostly family, sometimes it's chosen family, sometimes, you know, it's friends, it can be people you've never met that can be more supportive than sometimes the folks in your home. And so, it is important to build that support system. The other thing I really want to emphasize is that when we think about being a menstruator in this society or being the parent that bears children or really is over the household and really navigating things; sometimes it's hard to prioritize ourselves, but the truth is that our family needs the healthiest version of us. And so, when you put in that context, that self-care, that prioritization of your health is not selfish at all. It's for the greater good. It's for the betterment of your family. You know, that's a real thing.
And the last thing I want to really emphasize is that it's important to reach out for professional help if needed. Uh, and so as we highlighted at the beginning of this episode, if we're in a place where our personal and professional function is impaired, you definitely need help. This is not something you have to push through. You are not stronger for coping. There is a community for you, and there is help for you. Any parting words, Casey, that you'd like to leave our listeners with? Thank you so much, of course, for being so open and honest and so engaging during this talk.
Casey Berna
Oh, goodness, I am so very grateful to be here. And I think what you just said, means so much that don't be afraid to reach out for help that things like endometriosis, fibroids, all of these things are not only, don't only cause physical pain, but they impact, school, your job, like your social relationships. Really like it impacts every corner of your life. So, it's crucial to have a wonderful multidisciplinary team in place, have an endometriosis expert, have, um, a pelvic floor therapist is often helpful, help with nutrition. And certainly, I'm a social worker, so I advocate for mental health because all these things can cause anxiety and depression and isolation and hopelessness.
I once talked to a patient, and she shared that every month, just that dread that it was coming, and the pain would be so severe. So even though society may dismiss it, or others may dismiss it, it's, um, it's crucial and it's difficult and it's devastating and getting as many people on your team in place, whether it be providers and also support groups. Find your people and just get all the support and nurturing that you need because this is really hard.
Outro
Dr. Charis
Yeah, it's hard and I think when we accept that it's hard, that's when asking for help is normalized. Yeah, so I do want to thank our listeners for sticking with us throughout this episode. Of course, thank you, Casey. I really appreciate you being here. So, I do want to also thank Pfizer and Sumitomo Pharma America for sponsoring this discussion. And giving us this platform to have this much needed conversation. I do want to put a little plug in for our next episode, which is a dialogue on disparities. You don't want to miss this conversation. Thank you all and see you next time.