Ep.2/ No Period? Now What with Dr. Nicola Sykes (Rinaldi)

May 18

Show Notes:

I'm super excited about my guest on the show today, Nicola Rinaldi, Ph.D. Together, We take a deep dive on Hypothalamic Amenorrhea (HA), the book she co-authored - No Period Now What, and much more!

Listen in to learn more about:

How having eating super “ Healthy”, an active lifestyle, and engaging in sports/gym activities can influence your menstrual cycles?
Why so many doctors don’t know about HA?
How to approach HA with your doctor, who may not know about it? i.e., “normal” labs, “being healthy”, being approached to go on the pill to “protect your bones"
What are some of the health issues that come along with not having a healthy menstrual cycle?

Listen Now:

Let's dive in. Hi, everyone, and welcome back to the second episode of the period recovery podcast. And I have the most special guest with me here today. And it is a woman that has helped me through my period of recovery journey and pregnancy and beyond. I want to introduce to you Dr. Nicola Sykes, formerly known as Dr. Nicola Rinaldi the author of that no period. Now what book welcome Nicola, thank you so much for having me, Cynthia. It's such a pleasure to be on. And I'm so excited that you have a new podcast. Yeah,
I know, I'm so excited to it's been a long time in the making. But I just think about our history before we get into some, you know, deep period recovery questions and topics. But I remember back when oh, gosh, let's see, I had my first one in 2016. So it had to be somewhere around because the book came out in 2016. Right? Yes. Right. Yeah. So it was before the book. So. And I found you in a very small Facebook group. Do you remember the hospital group?
I do? Yes, yes.
And at the time, I was diagnosed with hypothalamic amenorrhea, which I, you know, was totally questioning because I thought I didn't fit the description. And we'll talk about that a bit more. But I found the small Facebook group, and there was like, I don't know, maybe like 15 Girls in it. And I was like, Oh my gosh, this is a thing. These, these women are like exercisers. And they eat, you know, relatively, quote unquote, healthy. Yeah, it was before the book came out. And I remember just learning more about it. But also like, even though I knew it was a thing, it was hard, because there wasn't like concrete evidence out there, like your book now, and is such an amazing resource for so many across the world. And I remember saying, Okay, I want to go to the fertility route, because it was five years in the making of figuring out what the heck was going on with me. And then I remember you came in and really, you know, helped guide me and like, Okay, you might not have been ovulating. Yeah. And kind of, you know, ask your doctor for this or that. And once we kind of talked, you know, through that, I believe I conceived on my third cycle, which was like, Oh, my gosh, like, you were totally right, like when I was ovulating, because I ovulated laid off of cash was it from there, I can't remember what drug was. But anyways, it was a combination of the right kind of help feeling like, what I was going through was somewhat normal. And then also making sure I was eating enough and resting enough and practicing that self care. So I want to thank you, because I truly believe you helped me conceive my first little miracle, though. Thank you. And I know how many women across the world are so grateful for your work in the know period. Now, what book and speaking of is there an updated version? Is there any new things you're coming up with? And of course, I want to know the inspiration behind the book.
So let's start there. So the the inspiration was really my own journey with Ha, so I experienced Ha, at the end of my graduate career. So I was doing my PhD, and I was starting to think about getting pregnant. And so I'm a researcher. So I started reading, and I read, you know, online, the web, which was, I mean, this is the early 2000s. So, you know, infancy of the World Wide Web. And, you know, I kept reading, like, lose weight to have a healthy pregnancy lose weight to have an easier time getting pregnant, and a bunch of people in my lab, you know, we just hang out at the gym, we would play squash together. One of my colleagues was my volleyball coach. So, you know, I was I was super active physically, and he actually decided to go on a diet and I was like, oh, yeah, like I have some love handles to lose and, you know, perfectly aligned with my goal of getting pregnant or so I thought at the time, so I went on a diet I started limiting my calories and Knowing what I know now, like I was significantly significantly under fueling, I mean, I lost a lot of weight in a short amount of time. And then I went off the pill and I didn't get my period. And, you know, I sort of had an inkling that, oh, maybe it was, you know, maybe I wasn't eating enough, maybe I was exercising too much. And so I brought up to my doctor, I went to see her, I was like, I haven't gotten my period yet. And she was like, Yeah, you know, maybe you could eat a little bit more, maybe you could exercise a little bit less. And with no guidance as to what that actually meant, you know, it's just sort of like so ate a little bit more by like a couple 100 calories. And I cut down my exercise by, you know, doing an hour and a half a day instead of two, three hours a day. And clearly, that was not sufficient, because I was still under fueling and you know, all of that. So fast forward, I ended up getting pregnant. 18 months later, you know, I slowly gained back the weight that I had lost, I slowly cut down my exercise, went through a bunch of fertility treatments that failed. And then we were going to do IVF and I my body, somehow it had had enough time of like, getting closer to what I needed to eat that I ovulated on my own and actually got pregnant on that very first ovulation. And then when I was pregnant, I was put on modified bed rest I was having a ton of Braxton Hicks contractions ended up in the hospital for four days, they gave me magnesium, which was a very strange experience. So when I was on bedrest, a friend that I had met through my blog, I had been blogging all through this time, because there was nothing out there on the web about ha really and personal perspective. That's kind of what started my connection with other people. And so I connected with this woman through my blog, and she pointed out to me a message board about hypothalamic amenorrhea. And so I joined because I have nothing else to do. But right, yeah, and so I, you know, it was sort of this, it was sort of the start of this global support community for people with HIV was, you know, like, 10 to 20 of us at a time on this message board. And, you know, we would go and interact with each other, and I would share my journey. And, you know, my knowledge that I had gained through my own experiences, and then people would ask questions, and I would go like golf and read the scientific literature and to see what I could come up with. And eventually, people on the board are saying, you know, Nick, you know, so much, you should really write a book about this. And I have kind of looked around and realized, like, there was nothing, again, nothing available in written form that sort of put all this knowledge together. And I was like, Yeah, I'm gonna write a book. And it's just, it's so funny, because I never in a million years, pictured myself as an author, like, that was nowhere on the scope of my life plans ever. Like I was, like, I'm not creative. I but, you know, it's nonfiction. And I had a lot to say,
I mean, I share everything in the book from, you know, sort of my knowledge and understanding of how hypothalamic amenorrhea happens, how to recover everything that I learned about fertility treatments, and specifically how that relates to people that have experienced Ha, because I found that when I was going through fertility treatments, the doctors just treated me like any other sort of quote unquote, normal person. And I think that there's, there's some specific things that need to be taken into account when you've had he like, yes, you might respond to Clomid later than a normal person, you know, a quote unquote, normal person, but anytime I say normal, put quotes around it, because like, there's no, there's really no, truly, I mean, yes, there's always a wide range of experiences. So you know, all of that is in the book. And, you know, I did end up going through IVF, for my third son. So I had experience with that, and just sort of a different way of thinking about fertility treatments, that can be helpful for people that have experienced Ha, so yeah, so that's sort of how the book came to be. And, you know, I think one of the really cool things about the book is that I did a survey of hundreds of people that I had met through that board. And so that provides a lot of information that people are really looking for about others experiences, like, how long is it going to take me to recover? How much might I have to gain I mean, over the years, I've started to focus less and less on the weight gain and more on just nourishing your body. You know, as I've learned more about sort of Health at Every Size, and the damage that focus on appearance does to each and every one of us each and every day. So lots of learning going on. And I've made some changes to the book in 2019, sort of making it more healthy at Every Size of line taking out some of the sort of terms that are negative about body size. I also updated the partner chapter because when we when we originally wrote it, we were you know, the the group on the on the message board was very straight sis, basically white women generally. And so I wrote the partner chapter originally for husbands actually might go through Lisa did miss the writing on that chapter. And then somebody messaged me, and they're like, Well, why did you do that? Why did you focus on husbands? I'm like, Yeah, that's a really good point. And so when I, when I did the update, I sort of made it, you know, I talked about partners instead of husband, because it could be, you know, people can have partners of all descriptions, genders, they could not necessarily be a romantic partner, like, oh, all of that, you know, so just kind of making the chapter more accessible and more relevant for more people. Yeah. So now I'm working on translating the book, obviously, I'm not doing the translation working with people doing the translation into a number of other languages. And so I'm, I'm sort of going through and updating even further as we do that, you know, taking out some more references to gender, because the, you know, people, again, people can identify as non binary, but still have a period, or maybe they're a trans man, or, you know, so it's just people with periods instead of women, you know, it's just more inclusive. And I feel that it's important to include as many people as possible. So we've updated that, and then also split the book into two parts, because the current book is very focused on pregnancy. And yet, there are a lot of people who are trying to get their periods back or want to get their parents back without necessarily wanting to be pregnant. So I've taken out a lot of the focus on pregnancy, I'm adding a chapter on contraception options, because that's a question that I get asked a lot, all of that sort of is in the process of translating into other languages, but certainly planning on an updated English version in the not too distant future to sort of incorporate some of those changes in the English version as well.
Amazing. And it sounds like also more, Alright, tell me more.
I also have a dream of writing a book specifically for teenagers, because I think that that's, you know, that's a demographic where, again, maybe things need to be written in a slightly different way with a slightly different angle for to really capture capture the attention of somebody who's in their teens who, you know, bone density issues are so far away, and, you know, so just talking about it in other ways, and probably incorporating more more about body image. And I have a psychologist that I've that I've worked with, who's a trained child psychologist who is interested in, you know, co authoring part of the book with me. So having sort of that lens on things as well.
Amazing. Yeah, I probably making
it a little bit smaller and easier to digest. Yes.
Yeah. And of course, keeping, you know, since teens are likely still living under their, you know, parents house or whomever caregiver, making it accessible for them. And, you know, I think a lot of times, and I don't want to go off to the teen part anyways. But I do want to just say, I know there's a lot of teens that follow us both, always getting the questions of, you know, is this normal? My doctor tells me it's normal. And I guess what would you say to the teens, about not having a period when they probably should,
I mean, I think that your teenage years are probably the time of your life when it's most important to have your period because you are growing and changing so much. And having that having the hormonal input from the hormones that change throughout your menstrual cycle is really important for building bone density. And, you know, who knows, who knows what other effects I mean, there's, there's been so little research on the impact, the actual impact of not having a period. I mean, there's, there's more and more researchers working on it now. But particularly, we don't really know enough about the the changes that happen in our bodies because of estrogen and progesterone and FSH and LH and, you know, the inhibitors and prostaglandins and all the other, the hormones that are involved in hearing it. So, you know, I think that we know for sure that bone density increases most in the teen years and early 20s. So that's sort of the time when it's most important to have that as a sort of as a support for the changes that your body is going through. And like you're saying, it's hard to think about bone density when you're in your teen years, but it's really important because this is setting you up for the rest of your life. And so for doctors to say, oh, you know, no period doesn't matter. You know, that's, that's blowing off something that's really important to us. You know, it's kind of the same thing as saying to, to a biological male, you know, oh, testosterone is not really a big deal. You don't really need that. It's like that's a that's an important hormone that's really important for growth and development. And so I think that it's, you know, obviously again, there's there's a wide range of what can happen to people there are some people who have primary amenorrhea for other reasons that can't have periods. You know, that's, that's something to deal with, but the ideal, the ideal is for a person with Double X chromosomes and a uterus To or whatever it is a person with the uterus will say that way, your ideal to a person that the uterus to be having a regular menstrual cycle.
Yes, absolutely. So I'm glad we talked about that just a teeny, so let's kind of get into the the health quote unquote health behind, you know our world today and how we as a society and it's been for many, many years decades, saying, Okay, you must eat healthy and exercise daily and maintain a, quote unquote healthy active lifestyle with a good body weight or BMI or whatever. And so how, you know, how does this influence our menstrual cycles and specifically, I know, you know, this is only my second episode, and we may have not talked about hypothalamic amenorrhea much and I'm going to shorten it for the rest of our episode per ha, we're gonna just call it a day. But um, you know, let's talk about how that influences the menstrual cycle. And I guess lead into what is the definition of HA anyway,
the definition of HA hypothalamic amenorrhea. Amen. Maria is missing your menstrual cycle for three months or more as the technical definition, the hypothalamic part comes from the hypothalamus is a small part of your brain that's a major control center, it takes in inputs from all over your body, and it sends out hormonal instructions to basically all of your other hormonal systems, Ha is a amenorrhea, of hypothalamic origin because your hypothalamus is suppressed and not sending out some of the hormonal signals that it should be typically due to under fueling, often with, with over exercise and stress sort of thrown into the mix. And yeah, it does come very much from our society's focus on sort of, quote, unquote, health and the conflation of health with body size, you know, I think ha itself developed in our bodies as a way to protect us from starvation. So you know, through the millennia of human existence, there have been times where people have been in situations where they're not able to get enough food. And so the body has to figure out how to compensate for that, basically, how to keep fueling the things that are really important, like breathing and pumping our blood and sending energy to our brains, those are like the top three things that our bodies do. And so it's figured out ways to continue to do those things, even when we don't have enough energy. So it shuts down other systems, and one of the easiest systems to shut down is our reproductive system. And plus, you know, on the other side of that, reproduction is a very energy intensive process. So it makes sense, like the body doesn't want to be able to reproduce when energy is scarce. So you know, it makes it makes so much sense from an evolutionary perspective. And, you know, these days, you know, many of us have free access to food. And so the starvation is not not an issue. And obviously, there are people in the world for whom Starvation is absolutely a problem. And, you know, that's, that gets into that gets into much bigger discussion, the idea that the general idea is that if you're in a small body, you are healthy. And you know, there's been a lot of science or scientific work, looking at the correlation between body size and various health issues. So there's work that shows that, you know, people in larger bodies might be more predisposed to getting diabetes or having risk of heart attack. And so the problem is that that has been taken from being a correlation to being causation. So a lot of people now think that, oh, larger, if you're in a larger body, that means you will get diabetes and the diabetes is the fault of the larger body, it's, you know, it's not, it's nothing else. And same thing with heart disease. So there's been this big conflation between health and body size. And so it's sort of boiled down to, you know, it's healthy to under fuel, it's healthy to only eat, you know, vegetables that have no calories in them, you know, the smaller you can be the quote unquote, healthier you are, and that's really not the case. I mean, health to me is adequately fueling all the things that your body wants to do, and needs to do. The movements that you enjoy. I mean, 100% exercise is healthy for us. We that I think, is something that's true. Getting your heart pumping, moving your body, exercising your muscles, like that's all generally really good for us. The problem comes in when that exercise is under fueled because then your body is sort of in this dilemma. It's like you're moving it, you're expending all this energy, but it needs to, it still needs to, you still need to breathe, your heart needs to pump blood and your brain needs energy. So, you know, so it starts shutting down things and it's not only your menstrual cycle it you know, there are lots of other things that sort of get under fueled, and you know, you a lot of people in this situation, find that they're cold all the time, because one of the ways the body saves energy is by not warming you up, that's, you know, that's actually a big energy expenditure, your, you might find your hair and nails are brittle, because your body doesn't send energy to them to grow your hair or nails. Your bones get more brittle. I mean, that's, that's also that's also something that's a fact, you know, we know that but yet, it's, it's somehow less important than, you know, don't be in a big body. It's like that's, that somehow has become the the be all end all of our societies don't be big is like the major goal. And, you know, it's just so harmful to so many people. And for those of us who are sort of type A personalities, and you know, you're told only these certain foods are quote unquote, healthy, well, then I'm only going to eat those foods and you know, don't eat too much. Well, I'm, I'm not gonna eat too much. I like I'm really good at following rules. I too.
Yeah. Yep. And that, that perfectionism will get the best to you. And then, you know, add in the compliments you get when you start shrinking your body. Mm hmm. And how that really fuels you to keep doing what you're doing? Yes. Yes. So much. Absolutely.
Yeah, I mean, I think I think that our society in general is so focused on appearance. And, you know, that's all the advertising dollars that are spent to make us feel that way. It's like, you know, by this lipstick, you'll look more beautiful, have these eyelashes, you know, don't have ugly skin, you know, we buy all these skin products, buy these beautiful clothes, spend money, spend money, spend money, so much of it is, you know, it's keeping our focus on the outward things that really don't matter that much. I mean, it's, you know, to me, it's so much important, more important, what somebody is, like, on the inside the connections that they have with other human beings in this world. And, you know, what are you doing to sort of further, you know, make the world a better place? You know, it's like,
I just think I sit and think about, I was actually finishing, I hit a chapter left of more than a body, which is one of my favorite body image books. Oh, it's
such a great book highly recommended. The authors were talking about,
you know, what would this world be if we really judged or not judged, but saw a person for the person they are versus then, you know, the outside perspective, what a different world we would have. So yeah, I think, you know, the definition of health looks different, you know, for a lot of people, but I love your definition. I love how simply, you explained what Ha is. But it's it's hard to get caught up in the day to day, if you want to say beauty, thinness health. I mean, because everywhere you go, whether it's a friend, a family member, a doctor, there, oh, what's the topic of conversation? It's usually dieting or how many women have been, you know, not diagnosed appropriately with Ha, because they go into their doctors, and they're like, oh, you know, I'm eating lots of vegetables and fruits, and I exercise daily. And the doctor is like, oh, keep doing what you're doing. Yeah, no, no. And we often look to our medical professionals as like, the people that are going to guide us with our health. And so I wanted to just talk a little bit about and I am so grateful for all the research you were doing. And I know I just listened to a podcast episode with you and I can't remember the doctor's name that's doing lots of research with ha and cardiovascular health and stuff like that. Oh, Dr. Dr. Schoenfeld, yes. Which was such an incredible episode. If you haven't listened yet, please go to Nikolas podcasts all in and do that. But why do you think so many actors don't really know about Ha, and I'm sure there's more than one factor. But I just wanted to kind of know your opinion on that.
Yeah, I mean, it I think that it's not a big part of medical training, from my understanding. It's sort of they they, I mean, hopefully, this is changing, but as far as I've been told, there's not much time spent on the reproductive system. And, you know, there's so many nuances to it's it, you know, I mean, it should probably be an entire semesters course, for every doctor because our reproductive system has so many effects on all of our other systems. But as far as I understand it, it's it's only a few days and the sort of solution that's promoted for everything is firstly trol pills. You know, birth control pills are an amazing invention. And they have done wonders for the ability of people with uteruses to participate in the economic system. And, you know, not just be home, you know, raising babies, which is great, if that's what you want to do. But I think that we have a lot more to offer the world than just being mothers. You know, that's getting into more politics. Yeah. You know, I think that birth control pills have become a panacea and easy option for doctors to feel like they're doing something, but without really coming to an understanding of the root cause of the problem. So there are absolutely times when birth control pills are useful and helpful. And you know, things like endometriosis, they can be lifesavers for people, you know, I'm not somebody who thinks that birth control pills should all be thrown in the garbage. I mean, I think that there's definitely a place for them, you know, they can be a good contraceptive choice, if you you know, if pregnancy prevention is important to you, like, lots of things to think about, and my, my chapter, my new chapter on contraception is really long, because I try and incorporate all of that, you know, there's so many factors to consider. But birth control pills, because somebody is not getting a period is not a solution. It's a bandaid, and it doesn't tell you what the underlying causes, and I think, understanding the underlying cause, and, you know, then you can make a choice, do I want to fix that problem? Or am I okay, with the band aid for a little while, that is somebody's personal choice to make. But I think that it's really good to have all the information and to understand the choice that you're making, instead of just being told, Oh, take the birth control pills, you know, you'll be fine. Like, come back when you want to get pregnant. You know, that's, that, to me is not a good answer. That was
me. And we know, far too many women that are experiencing that as well. And I would have to, you know, agree with the medical training of it all. And actually, I have a couple of past clients who are going to medical school, and I'm not sure how much, you know, they're spending in the reproductive area. But they did share things that they were learning about Ha, in their medical training, which I was like, how excited Yes, so maybe like, in 10 years, because it's been like, for me, it's been over 10 years since I went to the doctor initially. And they said, Oh, here's a pill, come back when you got to get pregnant. But it's still happening today. Hopefully, it's happening a little bit less, because of all the work that you have done the book. I know, when I, the book first came out, I was like, Here, read this, I brought in all your backsheet my doctors weren't super receptive to that. But you know, doctors are human, just like you and I, and we don't know everything about everything. Right. But yeah,
I mean, I think I think that's really key for people to recognize and understand, including, including medical professionals is that there's no one person that can know everything about everything. I know, just about everything there is to know about Ha, but I you know, I don't know that much about PCOS. I don't know about thyroid disease. And I, you know, when people come to me those questions, I'm like, I am not an expert in this, you know, you need to go find somebody else who is. And I think that recognition that it's okay to specialize in one thing and understand one thing, but know, when you don't know, and tell people when you don't know, something, you know, don't pretend like, you know, everything and be unwilling to listen and learn. I mean, you know, I think we can always learn from other people. And, you know, particularly in the medical profession, if you're, if you're a primary care doctor, you know, you see so many things like you can't expect your primary care doctor to know everything, but they should tell you what they know, and what they don't know. And they should tell you, you know, okay, I don't know much about this, let me go and learn something or, you know, be open to hearing from their patients, like I've been researching, I think this might be it, like, what do you know about this, I mean, just having an open dialogue, I think is so so, so important. And, you know, all of us stretching our minds and our imaginations and being open to hearing from, you know, people who might have expertise that's different from ours. It's like, that's, you know, that's great, because nobody can know everything about everything.
Absolutely. And I don't know if it's like a generational thing, but I just remember growing up, my family was always really like, well, what does the doctor say? Like, you know, it's what does the doctor say? What does the doctor say and not particularly to what was going on with me, but just in general, like the doctor was, the end all be all like, if the doctor says x, then it must be and I think that still kind of occurs now a little bit and that's fine. But I guess, talking about being your own advocate when it comes to like, if you're really resonating with what we're talking about here and you're getting kind of maybe the runaround from your doctor or they're putting You know, you on birth control? How would we want to talk to our doctors about ha that may not know about it, and I'm sure it's going to differ from doctor to doctor, depending, you know, sometimes just like any medical professional are very open to learning themselves. I know if someone came to me with something and they were like, oh, you know, this, this and this about this, I'd be like, oh, you know, this is interesting. And if it could help my patients, my clients more that I would love that. So I guess it depends on the doctor, right? The conversation you're gonna have, but in a perfect world, and you had a very receptive open doctor, I guess, what kind of advice can we give to the people out there that are kind of feeling this way with birth control? Or maybe, you know, not knowing what the heck's going on with their period? Or their doctor telling them, oh, keep doing what you're doing? You're really healthy, but they have no period?