Nina Coslov
Data.
That is all Nina Coslov wanted. Data to explain the changes in her body (was she experiencing the change?) Surprisingly, she found there wasn't a lot of data for women to educate themselves on hormonal changes, perimenopause, or menopause. She recruited a friend, doctors, and collaborators to create Women Living Better, a consumer-friendly research and education organization. Her work has become a movement, really, and a portal to the answers from thousands of women (All together now: "Thank you!")
Editor's Note: When we spoke to Nina this spring, the word "menopause" was in the air. There are stories everywhere about validating a woman's feelings about her body changing. But when Nina's data came across our desks, we knew there was a story about a woman who had to know more. We had to know more about this story.
Our conversation begins here:
Can you tell us how you and your co-founder started Women Living Better? As a young woman, you were sort of brushed off by your doctors about some symptoms you were experiencing, that you wondered could be related to menopause, is that right?
I want to be a little careful about the “brushed off” by doctors because I think we have to step back and realize that sufficient research about perimenopause just has not been done. So most of our medical providers are doing the best they can with what they know. The lack of validation of our experiences—that’s happening. Whether we call it being “brushed off” or dismissed by health care providers, it really goes back to the fact that there isn’t ample research to create a basis for medical education, to have them know that women could be starting this process while their periods are still coming monthly nor about the very broad range of symptoms that can occur. I think once you’ve skipped a period or have an irregular period, then healthcare providers will look at what you’re sharing and say, okay, this sounds like you might be in the menopausal transition.
So yes, that was the situation for me. I was about 43 or 42 and the first thing that happened to me was I just stopped sleeping through the night. I’d fall asleep, but I’d wake up around 2 a.m. I joke that it was predictably somewhere between 2:08 and 2:11 a.m. and that went on for a long time. The other thing about it was I would be very awake. It wasn’t just like I’d wake up and get back to sleep easily or go to the bathroom and go back to sleep easily. I had a revving feeling; I had a lot of energy. And so I was awake for long periods of time. That led to some sleep deprivation. I had three young children at the time and it just seemed like something had sort of shifted for me, physiologically. Nothing really else in my life had changed. And so that was puzzling to me. Then I’d say maybe 3 or 4 months after that—and whether this was related to the lack of sleep, because certainly mood and stress responses are related to sleep—I noticed a feeling of fragility. I remember thinking, this isn’t me. I just don’t feel like myself. I was worrying about things I hadn’t worried about before. I think we tend to put these feelings in a kind of general anxiety bucket, but it wasn’t typical anxiety. I did not feel a sense of doom, my heart wasn’t pounding. I wasn’t sweating. I just felt less able to cope with things.
A really cool thing about it is that by virtue of creating Women Living Better for others, it helped me know that my experience was normal. Even the words others shared on the site about their experiences, helped me better explain what I was experiencing. Women Living Better does 2 main things. Primarily it offers information about how hormonal patterns change in perimenopause and what those changes can lead to (i.e. what symptoms can arise) for some people. But, we purposely also have many places on the website, polls and open-ended questions for women to share their experiences of and their questions about perimenopause. For example, women’s descriptions of feeling less able to cope were:
“I feel like I can’t calm down on the inside.”
“I feel like my fight or flight response is more sensitive.”
“I startle more easily.”
And those descriptors totally resonated with me.
So, back to how we got started. I mentioned these experiences of sleep disruption and what I’ll call a new, and not like me, fragility to both my primary care doctor and my OB-GYN. Prior to those appointments, I had done some digging in PubMed to see if I could find something that might explain my experience, and there wasn’t much, but there was a little bit to suggest that possibly my experience could be related to hormonal changes. So, I asked both providers that very question: “Could this be perimenopause?” The first question they asked me in return was, “Are you still getting a monthly period?” And I said I was. And so immediately they said, well, then this is not perimenopause.
My primary care physician offered me something for sleep and something for anxiety. And I left and I thought, this doesn’t make sense to me. My gut said there’s something else going on. I was telling all of this to my good friend, Jo, and learned she was having a similar experience. She was still getting a monthly period but was experiencing new irritability and she is a very even, calm person! It felt all of a sudden, out of the blue, and not like her. So I talked her into looking into this with me and that’s how Women Living Better started. In the process of trying to understand our own experiences, we learned so much even about our normal menstrual cycles that we didn’t know. And we thought, Gosh, our bodies have been doing this our whole menstruating lives, why do we not know this? We started connecting with experts who were interested in our idea that symptoms may start for some before noticeably irregular cycles and changing periods.
We did an initial survey in 2016 to test whether others felt like there was a gap in knowledge about perimenopause and menopause. We asked people, 35 to 80 years old, about their cycling status, what they knew about perimenopause, what they wished they knew, and so on. We got a flood of responses. In 3 weeks we had 400 surveys completed. And we had open-ended questions where people were writing and writing. And so we were like, “Wow, we have hit on something here. We’ve got to do something about this.”
The first thing we did was create the web site, an educational resource, with what we had learned. It’s the resource that we wish we had found. The site is evidence-based and cites and explains the relevant research in accessible language. Some people ask, “Can’t you just give me 3 bullets about what to do?” I can’t. Perimenopause is complicated. It’s different for each of us. And because we’re in a transition from a reproductive to a nonreproductive state, things are changing all the time. It helps to be aware of what’s happening in your body and be willing to tweak what you are doing to feel better over time. I like to say that Women Living Better is a kind of do-it-yourself, explore-for-yourself, educate-yourself resource.
It’s so interesting because as early as health class in high school, we’ve always been told that the menstrual cycle is all about bleeding. Right? Even though we know that hormones are involved, it’s always about bleeding.
It’s good point. So much is focused on bleeding, but there is so much more to know that I didn’t! Two key learnings for me that when taken together form an “Aha!” moment: first, that we have hormone receptors, estrogen, and progesterone receptors all over our bodies. They are in our skin, our eyes, our brains. Everywhere. We created an image of this on the site, Hormone Lady. It really drives the point home. Second, a wonderful study—that was done as recently as 1997, looked at hormone levels in a perimenopausal woman’s urine daily for six months. A graph of this, also on the website, illustrates the considerable fluctuations in hormones. This was the first study to challenge the narrative that estrogen declines during perimenopause. In many people, estrogen does not decline during perimenopause but actually rises higher and fluctuates more than it had previously. When you couple these fluctuations with the fact that there are estrogen and progesterone receptors all over our bodies, you start to see why perimenopause can be a really tricky time.
Now that you are educating a woman about her own body, the things she didn’t know she needed to know, how is this affecting the practice of medicine? How are the doctors taking this information?
That’a good question. I mean, I hope that most healthcare providers are glad when someone comes in with more knowledge about what’s happening to them, their hypotheses about why it’s happening, and what things they are interested in trying to feel better.
We are the experts on our bodies and how we feel and what has changed for us. We need to know that. I wouldn’t be comfortable with a health care provider that wasn’t willing to have a discussion about a path forward. They are the experts on what the options are and have a knowledge base of all the women they’ve seen go through this phase. That is important, relevant information but it’s half of what needs to be considered.
For that reason, in addition to the site offering education, we strongly recommend tracking menstrual cycles if you are still menstruating and any symptoms and their frequency.
An addendum to my story: Had I been tracking my periods, I would have noticed that they were coming closer together. That shortening of your cycle is a sign that hormonal changes are afoot. I’m still not sure whether my health care providers at that time would have seen my shortening cycles and said, “Oh, maybe it is perimenopause,” but they might have. We sort of dumb it down to either regular periods or irregular periods but it’s more subtle than that.
Detailed information about changes to periods, like heavier or lighter bleeding, changes to days of flow, amount of flow, and changes to cycle length can provide an opportunity for a more informed discussion with your health care provider as well as shared decision making if there are therapeutics to be considered.
While it seems like there is much more information about perimenopause out there, and there is, so many people still don’t know what to expect and don’t know what is happening when it begins, so there is lots to be done. There aren’t enough healthcare providers trained in perimenopause and postmenopause care. And, to your question, if you read much of the coverage in mainstream media, many stories are about women still being dismissed. I’m hopeful that the increased discussion about perimenopause has highlighted the need for much more support.
I hapen to believe that normalizing a patient’s experience can be a big help. I know it would have helped me to know that sleep and mood are often wonky during perimenopause. And I think for some people, just coming to Women Living Better and spending time on the site can do just that.
So tell me about your research.
After we got the first version of the site built, Jo moved on to another project. It was around the time I was realizing how vast the knowledge gap about perimenopause was. There were—and are—so many unanswered questions. I wondered whether I could do something to help fill that gap.
My biggest question, based on my personal experience, was whether for some people symptoms start before noticeable menstrual irregularity, that is while periods are still coming monthly. I wondered whether symptoms before a noticeable change in cycles were similar to or different than those later in the transition, closer to menopause, the final menstrual period. I decided I wanted to do some research. I was lucky to be able to connect with Dr. Marcie Richardson. She is the founder of the Atrius Menopause Clinic in Boston.
I asked her questions about what research there was on symptoms starting early and she put me in touch with an amazing researcher from the University of Washington in Seattle, Dr. Nancy Woods. Dr. Woods has been a pioneer in midlife women’s health research. I shared my idea about symptoms starting before menstrual irregularity and that some people were getting brushed off or dismissed and turning away from mainstream medicine because of it. Dr. Woods thought this was interesting and related to her previous work, but she hadn’t explored it directly. She agreed to look into it further.
So in 2019, we started a research collaboration, the 3 of us, that is still going on today. We started with a very large, cross-sectional survey in 2020, and we’ve now published 6 papers in peer-reviewed journals based on that data. We are currently working on a 7th paper. Our first paper really answered the question: What is the symptom experience for some people while they’re still getting monthly periods and how does that compare to once they’ve started having much longer cycles or a skipped period?
That survey and the whole paper are on the WLB website. Interestingly, we had to do a GoFundMe campaign to make it open access and available, because I never thought about it being stuck behind a paywall. I was just so focused on getting it done. Now the whole paper is out there and I tell people, go look at tables 3, 4, and 5. They strongly support the message “you are not alone.” There is really such a broad range of symptoms that arises during this time. It’s important to note that at the same time we are making this reproductive transition, we are also aging. Research hasn’t yet linked many of these symptoms to hormonal changes per se. But we know that many midlife women report them.
So if I had to say the top 3 things that the first paper found, they would be: 1. For some people, symptoms start before periods are noticeably irregular. 2. The symptom experience is very broad. We all expect it to be a hot flash or a night sweat. It isn’t. It’s in fact, much broader. 3. 59% of respondents said they expected changes associated with menopause to begin at age 50 or later. So, we’re not expecting them until 50. And, we’re really just expecting hot flashes. So when other things arise well before 50, we’re thinking, something is really wrong with me. We don’t have an explanatory model for what’s happening.
And this isn’t to say we don’t still have to rule out other things—other issues crop up in midlife, other health conditions that are important to rule out. But, I think if we can understand what is normally associated with this hormonal transition, we’re just so much better prepared.
Women are thinking “Do I need an antidepressant? Some of these women could be facing mental health misdiagnoses.
Yes, I want to be very careful to say that if anything interferes with your life, you should seek advice from a health care provider. But if you’re noticing mood change, feeling more tearful or more irritable, and you’re tracking when it occurs and you notice these mood changes are ebbing and flowing with your cycles, which are also changing in length, just having the knowledge that this can happen in perimenopause can provide an explanation of what’s happening. I mean, this answer is unsatisfying for some people who ask, “What can I do and how can I feel better and what pill should I take?” That’s not really what I’m doing. I am trying to sort of change what we know, how we educate, and how we frame this period of life, so we know more what to expect. I’m not saying it’s all going to go away, because it’s a transition and, you know, it’s the reverse of adolescence. That’s not an easy transition either. But we didn’t have families depending on us. We weren’t trying to balance a million things. We can kind of just be a teenager and let those changes take place. And it’s much harder at midlife to do that.
You specifically mentioned antidepressants. I think there is some data related to antidepressants and their role in treatment. In our research about how perimenopausal health care interactions went, many women were unsatisfied because they were offered an antidepressant when they were sure their symptoms were due to hormones. For hot flashes and night sweats, collectively called vasomotor symptoms, there are antidepressants that in research are close to as effective as hormone therapy (estrogen or estrogen and a progestogen, if you have a uterus) in terms of treating hot flashes. For women who can’t take hormone therapy or with health care providers that aren’t comfortable prescribing hormones, this is often offere
Not to mention what we do know about menopause before we do the research is what we learn culturally. Is it Golden Girls or is it Sex in the City? Then we start looking online, going to doctor Google and we’re inundated with these products that relate menopause with sexiness. Because that’s what we’re all thinking when we’re bleeding for 21 straight days and putting on 10 lbs, right? “How do I get sexier right now? [laughing]
Oh, exactly. Yeah. [laughing] It’s insulting really, the suggestion that we should be concerned with being sexier just as we’re dealing with this wide range of changes. It can be a vulnerable time and many products marketed to us at this time are just taking advantage. It makes me mad.
The other thing I should do, because we haven’t covered this and it can be confusing, is talk about definitions. The technical definition of menopause is 1 day. It is the final day of your menstrual period. It’s a very weird “look-back” definition because you don’t know that you have had your final period until you have not had another period for 12 months. Technically, even in those 12 months, you’d say you were perimenopausal because you don’t know that you’re in the last 12 months. After you’ve had your final menstrual period, you’re postmenopausal. That is the very technical definition but often the term menopause gets used very broadly to cover everything related, the whole lead up to menopause and all the symptoms. Everything before is perimenopause. Also sometimes called premenopause.
Now, the strict definition of perimenopause, also called the menopause transition, is that you have persistent seven-day differences in your cycle length. So that would mean you have a 35-day cycle followed by a 28-day cycle. For it to be persistent, it has to happen twice within ten months. My belief is that we should change this definition to include the time when cycles start to shorten and symptoms arise for some. But as of today the persistent 7-day difference is the technical definition of when perimenopause starts.
We should be educating women when they’re a little bit younger.
Yes, I think we should start educating before all of these things begin. I would love to see some kind of education around 35. To your point, how much better equipped would I have been if I had gotten information about perimenopause at 35? Now, I had a child at 35, and many of us are having kids later and people say, “Nina, 35 is way too young for this message, people don’t want to hear this then.” But I don’t agree. I think we do women a disservice by not preparing them for what might come. Maybe the right age is somewhere between 35 and 38. But, by 40 for sure!
The ideal script goes something like, “Listen, in the next 10 years, your body is going to begin to make this transition from your reproductive years to your nonreproductive years. For some people, that is a non-event. Their bodies kind of absorb the fluctuations and they just suddenly realize they haven’t had a period in 12 months and they’re done. But for other people, those fluctuations have impacts all around their bodies (brain, bones, muscles, skin, hair). And here’s the range of symptoms we’re starting to uncover in research. I just want you to be aware of them. If any of them start to get in the way of your relationships or daily life or work, please come see me. We don’t have perfect solutions to them, but we can try things and then tweak them, and I’m here to support you.”
That could be a game changer and it is a super simple conversation. It’s 3 minutes during a well-visit. And maybe here’s a pamphlet, here’s a website—these are evidence-based. If you have questions, go there first. But again, reach out to me if anything interferes with your daily life, relationships, and/or work.
The other thing that we’re up against here is that the Office of Women’s Health wasn’t established at the NIH until 1990.
There’s an Office of Women’s Health? [laughing]
Well, yes, I’m here to deliver some good news—there is an office of women’s health. [laughing] But, the bad news is, it wasn’t established until 1990. Soon after that, these really important—the first longitudinal—studies about midlife women began. And then it takes research, on average 17 years, to make it to clinical practice so that is a long time. What I’m trying to do with Women Living Better is fill that in a little bit. Now, I’m not going to change clinical guidelines, but if I can take a study or a couple of studies and say, “Look, this is what this research is showing,” I think that can help women. Again, I’m trying to normalize and validate what women are experiencing, but we need more data on the experience of the path to menopause—much more! There’s just so much to be learned.
I sort of joke that Women Living Better is crowdsourcing the menopause transition. We’re collecting lots of data from women about their experiences but we’re not taking blood samples and correlating the symptoms reported with hormones which needs to be done. What we can say is, “a lot of women are having this experience.” That is what I can do with my resources: raise questions, do this kind of research, and share it back with women to help them.
So now there are going to be a ton of questions like, “Is that why I can’t drink wine? Is that why I’m gaining weight? What else do we need to know about menopause?
Many women report not being able to process alcohol in the same way in perimenopause. It is certainly true for me. Weight gain is very tricky. I don’t think we have the answer yet to what causes it at midlife. A recent study showed that metabolism doesn’t change until we reach 60. Research does document a loss of lean mass and an accrual of fat to our mid-section, waist area, during the menopausal transition. There is no one reason that is understood to be the reason behind weight gain, so many of the diets/programs promising weight loss based on some definitive understanding about how things work are unfounded. I think there is too much focus on women’s weight to begin with. Also, there’s chronological aging and there’s reproductive aging happening at the same time. It’s very hard to tease out what causes what.
You spoke about how it affects our bodies and the importance of physical fitness. What we need to know about is what will naturally happen to our bodies in a healthy way versus what we think we need to do to keep lean.
From what I’ve read, this is not my area of research, continued movement, lifting weights heavy enough to build bone and preserve lean muscle mass, and anything that helps with balance to prevent falls will allow us to be able to do the things we want to do into our later years. We’re learning that perimenopause and menopause are both a body and a brain thing. I think our future health is more linked to our midlife health than we knew before.
It all starts with questions. You’ve got to keep asking.
You have to, really. I just did a post trying to help women be wiser consumers of studies. So many kinds of media outlets grab a study and add a sensational headline to get clicks. When we read about new research, we should be asking how many people was that? Was it 30 people or several hundred, several thousand? Usually the more the better. What kind of study was done? Was it randomized controlled? You get interesting information from an observational study, but it only tells you that 2 variables are associated. Only a randomized controlled trial can tell you about cause and effect. It’s really tough to be a perimenopausal woman right now. You brought up the whole thing with products and programs. With social media there’s all this stuff out there and a lot of them are just not tested to prove they work or that they’re safe. It’s just an influencer or a marketer’s claim. And we’re vulnerable.
We’re vulnerable because we’re all feeling like we’re supposed to look like this. And how do I get there? Is there a magical pill? Is it because of this?
Well, you don’t feel well and you read about something that purports to help with what you are dealing with. In the beginning of my perimenopausal journey, I tried a bunch of different supplements. I would take them and think maybe I’d feel a little better. It’s tricky.
It’s so hard to make time, but I think our bodies need a little more support during this time. It’s all in the “self-care” realm but not spa-type self-care, more the basics. If we can create a little more downtime, get outside for a walk, eat and drink more selectively, be really deliberate about sleep, and find a way that works to manage or calm our nervous systems. Just learning to breath, with deep belly breaths, for 5 minutes at a time can go a long way. We are starting to learn that these hormonal changes affect our stress response and our stress resilience. Whether it’s walking or running or yoga or breathing or mindfulness meditation or some kind of breathwork—I think it can be a helpful and important part of trying to find some balance and feel better during this transition.
