"The pelvis is the center of our center."

Missy Lavender with Dr. Barb

Missy Lavender made a dramatic change in 2004, shifting from a career as an executive in investment management, investor relations, and real estate banking. She founded, that year, a Chicago-based nonprofit called Women's Health Foundation to promote pelvic health and wellness. The foundation has evolved in the intervening years, but has retained its focus on pelvic health for women, producing educational materials and events for women and girls. Currently, their work includes developing a digital platform to help a woman diagnosed with a pelvic health disorder to be educated and start treatment, providing a technology-based coach and mentor all the way through treatment and recovery.

Dr. Barb: Welcome to the Fullness of Midlife, where we talk about health, love, life, and meaning. I’m Dr. Barb DePree of MiddlesexMD. I met Missy Lavender a few years ago. In fact, we introduced her in a blog post when she invited me to be an advisor to the Women’s Health Foundation, which she founded based on her own pelvic health challenges. That organization has evolved, and the interest for women’s pelvic health is now carried by Below Your Belt. Welcome Missy!

Missy: Thank you, Barb. Nice to be here.

Dr. Barb: So you’ve described before the events in your life that led to your rather abrupt change in focus from investment banking to women’s health. Can you share with our listeners, Missy, what the context of that change was?

Missy: Sure. I had a baby. A fantastic, almost ten-pound baby boy, literally 19 years ago, almost to the day. And I did everything, Barb, I thought you should do, read all the books, and had a pretty tough labor and delivery. And when he was born, and I woke up the next day and got out of bed and something was running out of my body, but I couldn’t identify – I knew it wasn’t blood, but I couldn’t identify it – I buzzed the nurse, kind of frantically, waited for her to come in, and she pats me on the back, puts me back in bed and says, “Oh honey, that’s perfectly normal after a forcep delivery.” And I went, “What is perfectly normal?” She said, “To lose control of your bladder.” And I went, “What!?”

I didn’t have that in my chapter, in any of the chapters I had read in any of the books. And other things accompanied that – feelings of things kind of shifting in my body – and some of that is related, normal postpartum things; but when things didn’t get better in about four months, I was fortunate to call a friend of mine who was a healthcare provider. I was fortunate that she asked the right questions, and she directed me to a female pelvic medicine specialist, an urogynecologist, here in Chicago, who told me, basically, I looked like half of her patients. And at that point you could have pushed me off her table with a feather.

She said, “Yeah, older moms, big babies, forceps delivery, episiotomy, lots of pushing.” And in the second stage of labor I actually had a person pushing on my belly trying to get this child out. A lovely kind of confluence of events that delivered me to be a pelvic health patient. And I decided right there and then that that was not okay, and I wanted to do something to try to help other women not end up in my situation, or help the ones that were. Hence the Women’s Health Foundation.

Dr. Barb: Wow, that’s a remarkable story. So for you, it was such an abrupt event of normal pelvic health to kind of a profound change of pelvic health. And was it all around urinary continence? Was that really the foremost symptom you were experiencing?

Missy: No, I had urinary incontinence. I had pelvic organ prolapse. I had constipation like 400 million other Americans. I had sexual dysfunction, so sex was not comfortable, even after the normal recovery process. And it was such a pronounced situation that our, the mission for the next two years was to survive through a wonderful myriad of pelvic floor physical therapy and other devices, until I had my second baby, which I was planning on, which I did, and then I had full reconstructive surgery. So it was just a perfect confluence of pelvic health nightmares.

Dr. Barb: Wow, that is remarkable. It is said that one in three women has at least one pelvic health disorder. And you’ve just talked about some of the ways that might affect women. Are there other ways you see pelvic health disorders influencing our day-to-day function and enjoyment?

Missy: Absolutely! So, what we know from being in this space now for over fifteen years, is that there’s an increase in depression, there’s an increase in anxiety, which you can imagine – these are directly correlated to the symptoms getting worse. Women decrease their activity levels, because if I’m leaking, bleeding, or in chronic pain, the last thing I want to do is go to my kickboxing class or jump on the treadmill. They end up slowing down or modifying activities. They can’t sit through a meeting without getting up to go to the bathroom a couple times; that impairs their work environment, or their ability to go see their grandchildren if it’s more of that urgency/frequency. They tend to gain weight without movement, so then you get into obesity, diabetes, hypertension, heart disease.

I like to say, Barb, we’re looking at all these huge chickens with all these health conditions that we’re all focused on, that are very important to focus on, but I wonder where the egg is? And maybe the egg is that most of those women have something going on below the belt that’s keeping them from healthy movement, for example, or intimate relations with their partners. I mean, I will do the research one day, if I can get my hands on the right data set, to look at how many women that get divorced have pelvic health disorders. I would bet it’s a lot of them.

So, it’s a pretty important place for us as women. What goes on there is complicated, what can happen is complicated, and taking care of ourselves down there has to be as multifactorial.

Dr. Barb: And one of the take-aways from your experience was that you recognize we just don’t talk enough about those “lady parts” so to speak. So women don’t understand what is going on, they are taken by surprise, and they just don’t have any baseline knowledge about that. So I assume one of the motivations for you to do what you’ve done, is recognizing the silence and trying to come out with the message to women. So, give us some information about how you’ve been able to expand the message.

Missy: Sure, so you hit it right on the head, Barb. I mean, we have this mantra of “bringing women out of the water closed and into the light.” There was a statistic early on in my career that I heard from the National Association for Continence, that women cope between seven and twelve years with these issues – and this was a bladder control issue, but I think it’s all of them – and that it takes up to four times of bringing it up to their health provider before they get treatment (I’m going to put “treatment” in air quotes). So, that’s not okay. That was one of the most alarming things I heard. You know part of it is the shame and embarrassment of losing control of your bladder or bowels, that you supposedly conquered when you were three or four and got your big girl panties. But, it’s so common and not normal that that’s where we have put our focus, is like, “Look, everybody has a bladder. Everyone poops. Everyone pees. Everyone has gas.” Those are great children’s books, and if it happens to you as a grown up, it is common, but not normal. And then “Here’s what you can do about it.” And some of the “here’s what you can do about it” are things that are really simple. Simple things like, how do you exercise, what do you eat or drink. So we set out on a huge course of everything from social media campaigns, creative events, like one of our favorite events as a foundation was, “Sex, Chocolate, and Your Pelvic Floor.” I mean that sounds like fun! I’d rather go to that than a bladder health night!

Dr. Barb: Absolutely!

Missy: Right? And you know, we’re going to get the women in around something that everyone wants to talk about, which is sex, and we’re going to ply them with chocolate and maybe a little champagne, and then we’ll teach them a little bit more about their bodies below the belt. So it’s this combination of really keeping things as we say, “credible, medical, but approachable” that’s really our mantra in how we approach this space. We want to be really respectful of where people are. We want to help them understand their bodies; we want to help them move towards health. And then if everything we can think of to give you a more behavioral way doesn’t work, where do you go? Because, that’s the big thing, Barb. These women don’t know where to go next.

Dr. Barb: And have you been able to get resources together? Because that is a barrier and I’m in a community where we have really good pelvic health therapists who can come alongside urologists, whoever that team might be. But, there are so many individuals who maybe don’t live in an area where they have resources. So I think you’ve been able to also provide some education that women could maybe do, even short of having a skilled practitioner, is that correct?

Missy: Exactly. And that’s exactly what we’re working on at Below Your Belt. We decided about a year ago that we needed to figure out a way to utilize things like the technology that we interact with everyday – i.e., our phones – and create something that would bring this information to women in a way that was more approachable and easier for them to access.

So Below Your Belt’s mission is to create a digital suite of products, and we’re starting with women, and we’re starting with women who are symptomatic. And we want to create something that can be with them to educate, coach, guide, nudge, empower – whatever words you want to use because there’s going to be a lot of them – as they move through this algorithm of care: this is what you’ve just been told by your primary care provider or your family practitioner that you have and they’ve referred you to a pelvic floor physical therapist. Okay, what is that about? What is that appointment going to be like? What’s going on in your body? What’s your anatomy look like – if you care. Some women don’t care, they just want to get rid of that symptom and that’s okay. And then it will potentially help them understand not only what that first patient visit is going to be like, but if they’re scheduled for surgery eventually or treatment, like tibial nerve stimulation. What is that going to be like? What do I need to know pre-op? Post op? You know, “Did you schedule your post-op visit, Cindy?” “Sure.” “Here’s the number in case you didn’t.”

We really want to again, tip this industry on its ear a little bit and reach out to women in a much more engaging and proactive way than we all have been in the past 15, 16 years, in my experience.

Dr. Barb: So yesterday, I saw a patient who... I think you referenced to earlier, even in marriages, making it through this, and there are many causes of pain. And this particular situation, this woman was having painful intercourse and part of the problem can be medical, where we can treat it with a medication and help restore some of the health of the vagina, some moisture. But a lot of it was her pelvic floor, and I’ve been having this conversation with this patient over a number of years about pelvic floor therapy and really the next step needs to be a therapist. And these women, generally uniformly give you a look of, “What? Really? Are you kidding me?” And I think, obviously everybody knows about physical therapy for your shoulder and how you rehab it after surgery and you injured your knee. But this idea that there’s even therapy that you can do for your pelvic floor is a hidden concept, and then the idea of, “Me? Really? I’m going to have to do that?” So, I find it really hard to bring women along to the point where they’re willing to engage in treatment, so I’m – I think your website can be a nice adjunct to, again, bring it down to a level of understanding and engagement where it might be more approachable for women to consider.

Missy: Right. And pelvic floor physical therapy and urogynecology are, we say are the two most fantastic and least known subspecialties in pelvic health. I mean they are the primary pelvic health providers and women don’t know about them. They don’t have access to them in every community and so what can we do? We can help them connect to one if we have a “find a provider” aspect, which we intend to do. But walking them through what’s going to happen, you know a lot of women go to pelvic floor physical therapy, they don’t understand that they’re going to have to take off their undergarments, for example, because there’s internal and external therapy or manipulations or things that can happen in that appointment. So we want to spell that out so there’s no shock and surprise. But even coaching them via their phone, how to do some pelvic floor work, maybe before they even get there, is possible. And then helping them learn some of the behavioral therapies that that physical therapist might share with them, at least so that the setting is ripe for them to show up. And if they don’t have a physical therapist available to them, then potentially this interaction with our technology could provide some of that – not as good, obviously, as being there.

But you – Barb, you hit something that’s so important right on the head and I want to just reinforce what you said. One of my favorite doctors in this space said, “You know we wouldn’t scope the shoulder of one of the Chicago Cubs pitchers and then throw them back in the bullpen. No, we would prehab them. They would have the surgery, and then they’d have rehab.” In total hip replacement, you have a class, Everybody goes to the class. You learn what is going to happen. You have pre-physical therapy, and then you have surgery, and then you have post-op. In our space, we don’t! And it’s just unbelievable considering how important this is all. So, we really want women to think that way. You know, if I’m going to put you back into perfect alignment as a surgeon, I want you to make sure you know how to lift properly so that things don’t get damaged from improper body movements. Or, I want you to know how long you should be giving yourself a rest. This is big news, this kind of surgery. Any kind of surgery is big news. So, I really want women to start honoring and thinking of this as an important thing when it gets operated on and not thinking, “Oh I had a sling and, boom, I can just jump right back into my life.”  

Dr. Barb: And I’m the mother of three young adult daughters and I think about how to message this to young adult women to have an understanding, without making it sound like childbirth or aging sounds horrific. Do you have any insights into how to bring this message more broadly to the younger population, so there’s an understanding in advance, or preventative things that can be done to maybe reduce the risk of developing some of these conditions?

Missy: Mmmhmm, right. So we wrote our last book, ironically, called as well, Below Your Belt, for girls who were 10-14, they’re younger by a long stretch than your daughters, but we think it starts younger than most of us think. We don’t necessarily think about our pelvic health until we’re sexually active, or we’re going off to college and our mom takes us to the gynecologist for the first time. And I think that’s a mistake. This is the center of our center if you think about it, so there’s so many things that happen in the pelvis. And when we have our period in our country, we don’t even necessarily honor that as being such a big deal, or understand it. So then, forty years later, it’s a train wreck, because we haven’t paid attention.

So I would like girls of all ages, or young people of all ages, to first understand their bodies – inside and out – what’s down here. There shouldn’t be any mystery to the fact that you have three openings. And in case listeners don’t know, that third one you can’t identify is your urethra, you don’t pee out of your vagina. So, you know, you have an anus, you have a vagina, you have a urethra. This is how you take care of them. This is what happens there. This is what is inside there. This is what they are connected to. These are the big life course events, starting with your period and then potentially sex and then potentially reproduction and then, if you live long enough, menopause. This is how you prepare to be healthy through them. And then when it doesn’t happen, this is what you need to know. Understanding, Barb, for a younger person, if you’re home a day or two because your period is that painful that you’re doubled up in a fetal position in bed, that is not normal. That is something to talk to your grown-up and your physician, potentially, or your health care professional about. So, I think it’s just a lot of conversation around a place that we really just shut down about for many reasons.

Dr. Barb: And culturally, we’ve found that using some of the terms that you’ve just used, it’s hard in the media to get that message across! And it’s also hard to have a conversation about educating women without using proper terminology. I’m just wondering if you feel like you’ve been able to be successful communicating the message you just said -- which I think is so important -- and again, when I’m with patients in the office and talking about this network of muscles and everything above it and everything below it, kind of this central station, I think you might have used the same word, it’s just so critical. But again, you have to use the word vagina, and anus and urethra and intercourse...

Missy: Right!

Dr. Barb: … exactly! I’m wondering if you’ve met any resistance in any of the avenues you’ve tried to push this story out?

Missy: Umm, yes. And it’s not necessarily that these are taboo terms in the media as it is, “Oh, we did that story about urinary incontinence before,” or “Nobody wants to hear about that.” And I think it has to be delivered to receptive ears, right? So you have to know how to pitch it towards your audience whatever age they are. We’ve done programs from you know, 12 to 92 with women and I think it’s refreshing for women to understand their bodies. And in the media, yeah, we had a station here in Chicago we couldn’t talk about the word vagina. We couldn’t use the word. One wouldn’t let us put the word sex, one wouldn’t let us put the word pelvic floor, when we were talking about that "Sex, Chocolate and Your Pelvic Floor" event, I’m not even going to go into that. I just think there’s lots of other avenues where people are exploring for information from the internet, to good websites to podcasts to chatbots to all sorts of things. And I think we as women’s health advocates just have to keep on going forward, and using maybe a little more humor, maybe a little bit, just keeping it less clouded in all this taboo.

I really want women to understand that they have labia for example. We have these wonderful pamphlets we created with the material out of Below Your Belt for younger people. But actually we give them to a lot of organizations who deal with older women. And one of them is, “Here’s your vulva.” “Here’s one of your body parts.” “Here’s what it looks like.” “It comes in all different shapes and sizes.” I want that message to get out. There’s so much opportunity here to have insightful conversations that don’t have to be just clouded in shame.

Dr. Barb: Well, I’m excited that you’re a leading voice in this, because it’s time, and your passion and your voice, I think, are going to be critical in helping move the needle favorably for women. Do you have any advice for women who maybe aren’t having any pelvic floor issues at this point, of just maintaining pelvic floor health? Some ideas of what we should be thinking about, even before we might be having any issues regarding that?

Missy: Absolutely! So we call these muscles the biggest set of muscles you’re not exercising or taking care of. So, if you think about your pelvic pyramid, which is how we think about this place below the belt: You’ve got deep muscles in the front – your transverse abdominals, you’ve got deep muscles in the back, your multifidi, and you’ve got your pelvic floor. If you do pilates you know front and back, if you do core work you do front and back, but you neglect the bottom of the pyramid -- and they all work together, Barb -- so first of all, recognizing that these muscles are here that do all sorts of things, from balance to continence, to there’s sexual benefits to working them – increased arousal, lubrication, and stronger orgasms. I mean, that’s a wonderful thing. But even just as a child, knowing that they’re there, and we’re not going to wildly have a twelve year old kegeling at that age, but it’s just that these are your deep wonderful muscles that support you when you do ballet and when you’re playing soccer. And the higher the impact in your sporting life, the more consciousness you need to have about them. So that’s part of it, that’s the exercise part.

And then understanding, oh my gosh, if I have this Diet Coke with three potential bladder irritants in it: caffeine, carbonation and Nutrasweet, my bladder is going to be cranky more often, and I’m going to be running to the bathroom. Hmm, I’m not even aware of that as a person in the United States, necessarily. I may just be sucking down Diet Cokes and running to the bathroom every 20 minutes.

Well, that's just an awareness of, “Hmm, what goes on in my body below the belt when I move or when I eat certain things or drink certain things. Those are super easy things that we could all start to do. And just being in communication and conversation with your own body, I’d say, is the first thing.

Dr. Barb: I think that’s an important message for women. So thank you again, Missy. Can you once again for the listeners tell women where they can find your website?

Missy: Sure, it’s BelowYourBelt.health and then our foundation site is now called ToKnowIsToKnow.org.

Dr. Barb: And in closing, can you share with the listeners where you find richness at this stage of your life, Missy?

Missy: Yes, I actually find richness through a combination of being outdoors – I like to be physically active, so I run and spend a lot of time at the water – and then I teach yoga on Sunday mornings at my Wisconsin home and meditate every day. That keeps my Zen, which allows me to deal more richly – I still have two teenagers – so they keep me on my toes.

Dr. Barb: Well, good. Thanks again for all your work in this area. I look forward to some time we could put our brains together and continue working toward improved pelvic health for women.

Missy: I would love that, Barb. Thank you so much for having me today.

Dr. Barb: Thanks again!