Trust Your Body: MS, Menopause, and Speaking Up

Trust Your Body: MS, Menopause, and Speaking Up

Episode 197 – Podcast Transcript

[(0:25)] Stephanie: Welcome to the Can Do MS Podcast. I’m your host, Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today, we’re joined by Dawn Morgan, who also lives with MS and who is an avid women’s health advocate and researcher. Hi, Dawn. It’s so good to have you here. I’m really excited for our conversation.

[(0:43)] Dawn: Hi, Stephanie. I’m so happy to be here. This is awesome. Great, great conversation ahead.

[(0:49)] Stephanie: Now, you and I are friends in the real world, but for our listeners who do not know you yet, can you share a little bit about your MS journey and why this topic became so personal to you?

[(1:00)] Dawn: Absolutely. I’ve been living with MS for about 25 years, and this topic emerged from a complete lived experience. I was frustrated, didn’t know what was going on with- with my body and all the changes that I was feeling and noticing, and it just did not match the MS- typical MS symptoms that I would experience on a day-to-day, month-to-month, week-to-week. Uh, and so that’s where I think all of the, um, angst and the curiosity came from about this topic.

[(1:39)] Stephanie: Now, you said it felt different. There was just something off. You lived with MS for a really long time, and you can tell this wasn’t typical for you. So what- what was happening in your body, and what did you think it was at the time?

[(1:54)] Dawn: Well, [chuckles] I’m a bit of a hypochondriac.

[(1:57)] Stephanie: Yeah. [Chuckles]

[(1:57)] Dawn: Well, I shouldn’t- I shouldn’t say that, but, um, I- I guess I thought I was dying. And so I’m like, oh no, I have to go to the emergency room. And so I- I was noticing extreme, extreme fatigue, a lot of mood changes, not typical irritability. It was just- it just seemed really abnormal. I’d snap at, you know, a fork being misplaced or, you know, water being spilled, something that just was out of my character. I- I noticed, um, heart palpitations, and I thought, oh no, please God, don’t let me have, you know, some sort of, you know, heart issue. I don’t know. MS doesn’t cause this, so it’s definitely something else. I don’t know, but maybe it is MS. I- I was- I was spiraling. I think, um, the- the disrupted sleep pattern was really, really telling for me. It just seemed so out of the ordinary. And I- I think for me, I have such a tolerance for pain, and probably a lot of MS women who have MS, uh, patients feel, oh, we have a high tolerance, so we’ll just kind of push things to the side. And that’s what I did. I did not really address the major red flags that were saying, you need to talk to some specialist about what’s happening.

[(3:20)] Stephanie: Yeah. And what you’re describing is textbook almost, and incredibly common, right? MS affects predominantly women and mostly comes on in our 20s and 30s. So theoretically, the vast majority of people with MS, of women with MS will go through menopause and perimenopause. And in fact, 30% of all women with MS right now are perimenopausal. And I wanted to take a couple of minutes just to touch on how hormones are affecting MS symptoms and progression, if that’s okay.

[(3:54)] Dawn: Yeah.

[(3:55)] Stephanie: So we know that hormones play a key role in influencing how our immune system functions and how our nervous system functions. And we know that female hormones make our immune system more active than men. And that’s why most people with autoimmune conditions are female. Estrogen and progesterone, um, work together to either dampen or turn on inflammation. They also support neural health. But these fluctuations that we experience throughout our lifetimes, uh, really do continue to drive disease after it comes on. So the menstrual cycle, for instance, uh, we know that during our periods, worsening fatigue, pain, cognition, um, can happen right before menstruation and during. And this is definitely a symptom fluctuation. It’s not a relapse. It’s not MS getting worse. It’s definitely tied to hormones. And we see the same sorts of patterns in- in pregnancy where you have fewer relapses, um, but then after giving birth, you have that sharp rise in, uh, in relapse risk.

And so really we’ve known for a long time that hormones play a role, but I feel like pregnancy has gotten most of the attention when in reality, menopause is something we all universally will go through at a certain age. Um, so what we see in menopause and perimenopause is we see estrogen fluctuate, right? So you get these like episodes and symptoms and then we see it decline. And- and along with those fluctuations come all the things you were just describing, right? Fatigue, sleep, mood, cognition, even sensory changes. And of course they all heavily overlap with our MS symptoms. Uh, so when you hear that explanation, does it help make sense of what you were experiencing?

[(5:43)] Dawn: Yes, because every month I felt as if I was having some sort of relapse. I- I was holding onto my seat and saying, oh, this is a flare. This is a flare. I’m going to have to go to my neurologist. I’m going to need Solu-Medrol. And, you know, just going down the list of- of what I would need if I were to have this, you know, major exacerbation.

[(6:09)] Stephanie: Yeah.

[(6:11)] Dawn: I think really talking to my neurologist about what I was facing helped because number one, she made me feel like, oh, this is real. You are not, you know, having some sort of, um, sensation that isn’t- that isn’t, um, normal. This is something that is scientific, medical-medically based, and yes, we can address it. However, we need a team.

[(6:42)] Stephanie: Yeah.

[(6:43)] Dawn: And so that was- that was our conversation at that point.

[(6:46)] Stephanie: Yeah. And so you did start to try to get answers and see different providers. Um, and that’s how you came to realize that you have menopause symptoms. It’s not MS. And tell me about your care team. Cause I know this is something you and I have talked about a lot, um, that over 40% of neurologists say that they were not trained on women’s health and menopause is not part of their medical training. And they feel unprepared to help women with MS navigate their journeys. What was it like on the other side of that?

[(7:21)] Dawn: You know, it- it felt validating. I- I felt as if me speaking up for myself and what I needed and really getting- sitting down, having clarity. What’s happening in your body, Dawn? What are you noticing? You know, is this an emergency? Is this something that you can discuss with- with, um, a family member, a woman, someone who’s going through this same thing? Uh, you know, is this something that you can discuss with, uh, someone in the- in the MS community who’s also going through similar challenges? And most importantly, you’re MS specialist. How- what can you talk to her about? What steps do you have in place for yourself to get the best care and to get answers?

And I remember there was only one nurse that started asking and probing and really getting down to the hormonal aspects of what I was feeling. Um, I think the acknowledgement from that nurse, the acknowledgement from my MS specialist and seeking out other specialists, for example, I sought out a cardiologist and who was also a women’s health specialist. And it felt really, I- I would- I don’t- the only word that I can say is just comfortable. It felt comfortable being in these- these, um, I guess appointments and- and knowing that I didn’t not- I didn’t have to feel afraid in my body anymore because it just didn’t feel safe. I could actually have the freedom to say, I’m- I’m feeling as if each month I am having this major catastrophic event going on. And I don’t know whether to attribute these feelings, whether emotional, physical, whatever. I don’t know, do I attribute that to MS, aging? I don’t know. MS, but definitely MS or menopause. And when I say aging, that is perimenopause menopause.

[(9:35)] Stephanie: Yeah.

[(9:35)] Dawn: That’s what I mean by that.

[(9:36)] Stephanie: Yeah. And a lot of women I know get bounced around or dismissed or- or told to just sort of deal with it. And so it’s good that you had a care team that was women’s health focused that helps support you through that. And I’m sure if someone is listening to this, thinking what you’re describing sounds a lot like what they’re going through, what would you want them to do right now?

[(10:01)] Dawn: [Sighs] So many things. Uh, can I list a few? [Laughter]

[(10:05)] Stephanie: As many as you want.

[(10:07)] Dawn: Um, I would say, don’t wait until your next appointment. If- if you need to write something down and go into the portal and start questioning, you know, Hey, last appointment, you said X, Y, Z. I need answers to Z because I still don’t understand. It’s okay to ask questions. You may not get the answer right away, but it’s okay to ask questions. It’s okay to not know. And to feel- you can feel uncomfortable and- and also understand that there are changes that are going to take place. It’s okay. And that those feelings of uncomfortability, they will eventually dissipate when you seek out the right help from your providers, from your own research, I would- I would say. But I think- and that’s- that’s leading to my next piece of advice, track your symptoms. So when you start to notice things, track those patterns, write things down, get it- just to get a notepad, get it- I have my notepad right here [chuckles] with me.

[(11:16)] Stephanie: Yes, you do.

[(11:17)] Dawn: Always write it down, you know, um, and be clear, be really clear. Because if you go into your doctor’s office and say, well, I just don’t feel well. Okay. Well, what’s the problem? I don’t know. I’m just really tired. Well, are you tired? I don’t know. I’m just tired all the time. I mean, really be specific because it helps your care and you eventually want to have some sort of positive health outcome. You- you want to be sure that the questions are answered and that when you go home and you’re sleeping at night that you can- you can rest and- and- and know that, you know, yes. Okay, this is- this is definitely a real physical issue for women. This is something that we go through and I- I can get through [nervous chuckle] this.

[(12:05)] Stephanie: Yes.

[(12:05)] Dawn: I can definitely get through this.

[(12:07)] Stephanie: Yeah. It is normal. Every woman goes through as we keep emphasizing, right?

[(12:11)] Dawn: Absolutely. And the last part of- of- of- of what you were, um, of this question, advocacy is not complaining.

[(12:21)] Stephanie: Say it one more time.

[(12:23)] Dawn: Advocacy is not complaining.

[(12:25)] Stephanie: Yes.

[(12:25)] Dawn: And I think that sums up everything that I was saying.

[(12:29)] Stephanie: Yes. Absolutely. The biggest takeaway. Now, at some point you sort of already touched on this. You realized you weren’t alone. Tell me more about how that happened.

[(12:40)] Dawn: Well, I reached out to community. And when I say community, I mean other women with MS who were in this age range and some who were a little younger and just started to say, Hey, do you notice anything? Have you noticed anything? And some said yes. And some women who were a bit older than me said, no, I never noticed. I just breezed through this period in my life and it was fine. Uh, but there was a core group that really faced a lot of the same day-to-day struggles that I was facing. And I remember just having a session where we would talk and there were tears and there were lots of- of moments of vulnerability. And that made me feel like I’m onto something here. We are onto something. I- I am not alone. And again, I go back to my- my health care- my team of clinicians. They made me feel like I wasn’t alone. And that’s really, really important. And it was important for me to cultivate that relationship and to develop a clear- clear communication over time. Because I think feeling that level of safety really contributed to where I am now in my headspace and being able to- to communicate about all of- and being transparent about all of what I’m facing.

[(14:16)] Stephanie: And yeah, and this is where your story gets really interesting, right? Because instead of just stopping at awareness or talking to a few friends, you went an extra mile. So tell me about how you turned this into actual research.

[(14:31)] Dawn: So can I- can I tell like a quick, quick story?

[(14:34)] Stephanie: Yeah.

[(14:34)] Dawn: So I had a moment where I, of course, I’m panicking, thinking something is wrong. I’m going to go to the emergency room. I take myself to the ER and I’m crying and the ER doctors come in and they’re like, oh, we don’t know what’s wrong. And they felt something. And I said, oh my gosh, what do you feel? And of course I’m thinking it’s something else. I said, well, I have MS and it can’t be anything else because I can only handle MS. [chuckles] And they said, well, we’re going to do, um, you know, ultrasound, CT scan, you know, all- all the things, all those- those diagnostic tests. And they found that I- they- they found that I needed a hysterectomy or they said, well, they didn’t exactly diagnose me or anything like that, but they said I should see a- a GYN and talk about potential hysterectomy because of fibroids. And that’s what they found.

So I stepped into this world of research after my trip to the emergency room. I felt like it can’t just stop here. I need to understand what’s happening to my body. Yes, I have community. Yes, I have awesome clinicians. However, the pieces of this puzzle are not syncing and they’re not connecting. I need to talk to someone who is in research, someone who can really talk to me so I can share my lived experience, number one, and then maybe, just maybe, we can take this further and talk about it and help other women because I can’t be alone. I’m- actually, I’m not alone. And I knew that I wasn’t alone, but I just didn’t know where to get started. And I- I felt like speaking with people who were, um, clear in- in understanding research and what needed to be done and what steps needed to take place in order to move all of this work with menopause and MS forward, I felt like that was really, really important.

[(16:37)] Stephanie: Yeah, and that’s where you and I met because you reached out to iConquerMS and got my attention very quickly because this is absolutely something that deserves better science and better support and better understanding. Um, so what did it feel like to approach a researcher with a question that you had as a person living with MS?

[(16:58)] Dawn: Full transparency, I was so nervous. I was so nervous. Because, you know, coming from a background that is not research-based, professionally, I- I went to school to be a teacher. [Chuckles] And, you know, I just felt like I’m just a patient. You know, no one’s going to listen to me. Yeah, they’ll listen to the story, but, you know, I’ve been dismissed. So maybe they’ll say, oh, that’s nice. It’s lovely. But we have other things to worry about. We really have to find a cure. You know, that’s- I- I didn’t feel like women’s health was at the forefront. Even though I- I was speaking to other women, I just didn’t, not that people didn’t care or other women didn’t care, I just felt like healthcare just wasn’t there right at that time. But when- and then I thought, well, why not? It should be because we’re going through this and this is really important. Um, and so I was- I was nervous, but I did it. And, you know, it’s- it’s like taking off a veil. Like you- here’s another layer that I have to show and I have to- have to talk about it.

[(18:08)] Stephanie: Yeah. And you’re right. Women’s health is a big deal and it is under research and it is a priority. Um, and so now you and I have become part of a whole team of people who live with MS, of researchers, of clinicians, and we’ve worked on a number of, uh, of projects together. Tell me a little bit about how this time we’ve been collaborating on this for a little over a year, what it’s been like for you?

[(18:34)] Dawn: Well, it’s exhilarating, number one. I feel like a sponge. I absolutely love learning. I think I’m a student for- I will always be a student because every time we meet, I’m learning something new. I love asking questions. Um, I love being able to be a collaborator. I think that’s really important. The entire team, you leading the team, I think you make me feel like a part of some- some really groundbreaking, even though women’s health isn’t groundbreaking, but it kind of is because it’s been so under research for so many years. And we’re coming from a world where medical students don’t necessarily get the information that they need when it comes to speaking about women’s health and MS, particularly- particularly MS and- and menopause. Um, it’s just, it’s been a really wonderful experience. And I- I would highly recommend other patients to- to reach out to researchers. Why not ask?

[(19:53)] Stephanie: Yeah.

[(19:53)] Dawn: Why not probe and- and dive in? If you have a question about something that’s happening in- in your medical space, why not ask…

[(20:05)] Stephanie: Yeah.

[(20:05)] Dawn: …and start to- to really dive in?

[(20:08)] Stephanie: Because there’s one thing every researcher wants, and it’s to do impactful research and how better to understand what the impact of your research could be than working directly with the community that you are interested in. And I think that’s what patient-centered research is. I’m the same way. I started off as a patient, a curious patient, and then I became a researcher as well. And I have had the same experience as you of being brought to the table as an equal, um, but it should be patients that are setting the priority for science, not the other way around. Um, and we all bring something to the table, right? Researchers bring training and tools, but the people living with the disease really understand the impact and why. And working together, I think, is- is of the utmost importance if we want to answer the questions big and small. So how has this process shifted or changed how you see yourself?

[(21:06)] Dawn: I guess recognizing, again, going back to what I was saying, recognizing I’m not just a patient, that I do have valuable contributions to this topic and to research. I think my voice carries weight for sure. And, you know, like going back a- a couple of, uh, questions ago, I was thinking, why not? We already know this story. Most of us- most women know this narrative. We know it. But why not? Why can’t we change some of- of this story? Why can’t we place things in line with what works best for women? Why can’t we talk about HRT? Why- why am I just finding out about the details of HRT at this stage in my life? At this, I guess, this transition, I should say, this hormonal transition. I should- I should have known years ago, [nervous chuckle] but I don’t. I didn’t know that, you know. Uh, I didn’t know as much. Of course, I knew, but why don’t I know more?

[(22:23)] Stephanie: Yeah.

[(22:24)] Dawn: Um, and I think empowerment without minimizing this disease, um, and what happens in addition to the disease, um, and how sometimes MS and menopause or perimenopause work in tandem.

[(22:44)] Stephanie: Yeah. And if someone listens and thinks I could never do that, what would you say to them?

[(22:48)] Dawn: Absolutely not. I thought that. This is what I did. I said- I had a conversation and I said, I want to create my own qualitative research study. I got a used book because I never thought that it would go anywhere. I said, well, I’m going to talk to Stephanie, but I’m still going to do it.

[(23:08)] Stephanie: Yeah.

[(23:09)] Dawn: It’s called Learning from Strangers: The Art and Method of Qualitative Interview Studies by Robert S. Fleiss. So I- I just kind of scoured through this and I said, I’m just going to, you know, go on word and put questions and say, hey, please do a spell check and check all my [chuckles] questions and- and then go for it.

[(23:31)] Stephanie: I mean, you really- you took action, right? You had a question you wanted answered and you were going to find the answers one way or another. And I love that about you. You’re one of the most curious and motivated people out there. And I think, um, knowledge and research go hand in hand with empowerment and really understanding yourself and- and also contributing to the greater MS community. So I think the benefits of research go far beyond, um, just participating in clinical trials. So it’s really exciting to hear your story. And as I alluded to, we’ve learned a lot together. Hopefully you’ll be able to read a paper soon that we are hoping will get published. And we’ve- we’ve applied for grant funding together. Um, we even got to attend an MS conference in Phoenix this year together. So what stood out for you as somebody now on both sides, an MS patient and a researcher?

[(24:27)] Dawn: What stood out, uh, to me was, uh… Gosh. The patient voice, as we said, is invaluable. You- you really get to see how our voices are infused and pushing research forward. And I think the importance of that voice, the importance of what we have to say. And it’s not just the lived experience, it’s- it’s the- the- the force behind it of- of wanting a change and wanting answers and wanting clinicians to participate and to be able to… Well, when I say clinicians to participate, not just sit there and- and read off, okay, well, this is what was in your portal, and this is what you’re going to be prescribed. It’s really to participate in your appointments and what you need. And it’s- it’s treating the entire patient and not just that one particular, uh, trouble that you may be presenting to them.

[(25:53)] Stephanie: Yeah. I mean, there were a lot of talks that we attended on- on menopause, which shows how important this topic is becoming. The number of sessions at a conference is usually a good barometer of how important a topic is. And there were many that we got to sit on- in on. And I think one of the ones that you and I both found really interesting is hormone replacement therapy. So as you know, that there’s been some faulty research in the past that maybe seemed- made it seem like it was a risky endeavor. And so historically, women weren’t being offered hormone replacement therapy, when in fact, the opposite is true, especially in MS, where we know hormone replacement therapy, if you’re a candidate for it, um, can not only help you get through the menopausal transition, um, in more comfort, but we were sitting in on sessions talking about how it could, uh, protect our brains, our hearts, um, how it can prevent future cognitive decline after menopause. Really exciting science.

[(26:55)] Dawn: Yes. And I think one of the- the things that I took away from that was everyone’s desire to want to move research and healthcare forward. Like, really, really use medically, scientific, I keep saying these words, but, you know, statistics, things that are based in real- real time, real facts, and not just, you know, um, stories that, oh, this patient told me that. No, these are real- real life challenges that- that patients are facing. And from- from- according to this study, this is what we’ve seen, and this is what we’re going to present, and this is how we can make that change. And that- that was one thing that I took away that really, really resonated with me.

[(27:50)] Stephanie: Yeah. Science in action. It can feel like not a lot happens, right? We don’t have a cure yet. There are a lot of unknown questions, but there are so many passionate people. And I think the more patient voice we bring in, again, the better the whole field will be.

[(28:06)] Dawn: Yes.

[(28:07)] Stephanie: So if someone remembers one thing from today, what do you want it to be?

[(28:11)] Dawn: Patients belong at the research table.

[(28:15)] Stephanie: Yeah, I love that. And to call out other groups, right? So I’d like to call on medical students and educators in universities, teach this, right? Teach menopause, teach women’s health, um, bring patients to the research table like Dawn, because you have enriched my career and my work so much. And I think the future of women’s health has to be collaborative and we have to work together.

[(28:44)] Dawn: Absolutely. And don’t be afraid, medical students.

[(28:47)] Stephanie: [Inaudible]. [Laughs]

[(28:48)] Dawn: Don’t be afraid, medical schools. Open those books, start teaching. [Chuckles]

[(28:54)] Stephanie: And women with MS, don’t be afraid to speak up and advocate for yourself.

[(28:59)] Dawn: Yes.

[(29:00)] Stephanie: Good. Well, more to come soon from us. We will keep you all updated on what we find together. Dawn, thank you so much for being here.

[(29:09)] Dawn: Thank you for having me. This is such a great topic. I cannot wait to talk about this more. I could go on for hours about it with you.

[(29:17)] Stephanie: [Chuckles] Thank you. Thank you for listening to this episode of the Can Do MS Podcast. If you liked this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS Podcast. Until next time, be well and have a great day.

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