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317: Hypothalamic Amenorrhea, Contraception, and Evaluating Research with Dr. Nicola Sykes - Seven Health: Eating Disorder Recovery and Anti Diet Nutritionist

Episode 317: This week on the podcast, I speak to Dr. Nicola Sykes author of No Period Now What and the All In Podcast. We talk about the recent updates she made to her book, the changes we've seen in the HA recovery space, contraception and some of the myths around it, evaluating research and figuring out who to trust, navigating social media and much more.


Dec 17.2024


Dec 17.2024

Dr. Nicola Sykes is the author of the book No Period Now What and hosts the All In podcast.

She has a PhD in computational biology from MIT.

After graduating she worked for a biotechnology company while pursuing her dreams of a family, which were thwarted by a diagnosis of hypothalamic amenorrhea (no periods). She spent the next 18 months trying to conceive and immersed herself in research to learn how to recover from hypothalamic amenorrhea. Concurrently, she tried the medical route to pregnancy, with multiple doctor visits, injections, and ultrasounds resulting only in failure. Ultimately, she was able to achieve a natural pregnancy.

Since that time, Dr. Sykes has shared her knowledge of the path to recovery, helping hundreds of others achieve their dreams of getting their period back and pregnancy.

Here’s what we talk about in this podcast episode:


00:00:00

Intro

Chris Sandel: Hey! If you want access to the show notes and the transcripts and the links talked about as part of this episode, you can head to www.seven-health.com/317.

Hey, everyone. Welcome back to another episode of Real Health Radio. I’m your host, Chris Sandel. I’m a nutritionist and a coach and an eating disorder expert, and I help people to fully recover.

Before we get on with today’s show, I just want to say that I’m currently taking on new clients. If you are living with an eating disorder and you would like to not be living with an eating disorder and you want to reach a place of full recovery, then I would love to help. If you send an email to info@seven-health.com and put the word ‘coaching’ in the subject line, I can then send over the details of how we can work together.

And it doesn’t matter how long this has been going on, whether this is something that started in the last couple months or the last couple years maybe through to if it’s been going on for multiple decades. If you’re wanting help, you can email info@seven-health.com and put ‘coaching’ in the subject line.

So on today’s show, it is a guest interview, and my guest today is Dr Nicola Sykes. Dr Nicola Sykes is the author of the book No Period. Now What? and the host of the All In Podcast. She has a PhD in computational biology from MIT. After graduating, she worked for a biotechnology company while pursuing her dreams of a family, which were thwarted by a diagnosis of hypothalamic amenorrhea, or no periods. She spent the next 18 months trying to conceive and immersed herself in the research to learn how to recover from hypothalamic amenorrhea (or HA), and concurrently she tried the medical route to pregnancy with multiple doctors’ visits, injections, and ultrasounds, resulting only in failure. Ultimately, she was able to achieve a natural pregnancy.

Since that time, Dr Nicola Sykes has shared her knowledge to the path of recovery, helping hundreds of others to achieve their dreams of getting their period back and pregnancy.

I’ve been aware of Nicola for a really long time. I’ve had her on the podcast twice before. This was when she was going with her married name, Dr Nicola Rinaldi. She was on the show for Episode 63, which was back in October 2016, and then Episode 118, which was in May 2018. So it’s 6+ years since her last appearance. I’ll put both of those original episodes into the show notes.

What I tried to do with this episode is I didn’t want to just rehash those other episodes. Despite them being pretty old, they are still filled with good content, so I highly recommend going back and having a listen to both of those episodes. If HA is something that you’re dealing with, those episodes still stand up, so go and have a listen to both of them.

What we wanted to cover as part of this episode is, one, since the last time I had a conversation with Nicola, she’s put some updates to the book No Period. Now What? – which is incredible. I think of it as the bible for hypothalamic amenorrhea, so if you haven’t read that, I highly recommend that you do. Since our last conversation, there’s been some updates to the book, so we talk about that.

We talk about the changes that have taken place in the world of HA recovery, because a lot has changed over the last 5 to 10 years. So we cover some of the topics around that. We talk about contraception. This is a topic that Nicola started to write more about. She talks in the interview that she’s been changing the book, or creating different versions of the book, for German and French, and as part of that she changed some of the content of the book and wrote a whole chapter on contraception, and she’s now decided to put that into a single standalone book. She needs to do that in English, but that’s what is coming. We talk about some of the research connected to that, some of the findings with it.

We also then get into research in a broader sense and looking at, how do you know who to trust when we’re looking at research or the people who are talking about research? She talks about evaluating studies. So we have a conversation on this topic. We also talk about social media, and this overlaps with our conversation around evaluating research, because social media – unfortunately, it’s little soundbites, and sometimes it removes a lot of the nuance or people are going for very attention-grabbing things when actually, what was found might not be quite as attention-grabbing or we need to be adding some caveats to it. So we have a conversation around that.

There’s many other topics that we hit as part of this. It was lovely to have Nicola back on the show after so many years. I was on her podcast, the All In Podcast, recently, and that was a really great conversation. I got lots of great feedback from it. So what I’ll do is link to that one in the show notes as well, so if you haven’t listened to that, you can also check it out.

Without further ado, here is my conversation with Dr Nicola Sykes.

Hey, Nicola. Welcome to Real Health Radio again.

Nicola Sykes: Fantastic. Thank you so much for having me. It’s always lovely to chat with you, Chris.

Chris Sandel: It’s been a long time. I went back today and I was looking, and we did our first episode back in October 2016, so that’s a very long time ago, and we did another one in May 2018, so 6+ years. And then that’s been it. Then I had the lovely experience of being on your podcast earlier this year, and here we are again. I’m really glad, because I think there’s probably been a lot that’s happening over these last 6 years that we can chat about.

Nicola Sykes: Yes, lots and lots of things. [laughs]

Chris Sandel: Cool. You are the author of No Period. Now What?, and since being on the show, I know there’s been some updates to that book, so I definitely want to talk about that and go through that. I want to cover about contraception; I know this is a discussion piece that you suggested and an area where there’s going to be some things that people might not know about, so I would like to talk about that. And then just talking about the landscape of HA, what’s been happening since our conversation, but also over the last 10-20 years. I’ve noticed a lot of changes in that area, and I’m sure you’ve noticed a lot of changes, so I think it’d be useful to chat about that.

00:06:45

A bit about Nicola’s background

But I guess as a starting place, for anyone who hasn’t listened to our earlier episodes – and I will put them in the show notes – can you give people a little introduction on who you are, what you do, that kind of thing?

Nicola Sykes: Yes, absolutely. My life now, my world, is all about amenorrhea recovery and all of that. It started from my own personal experience.

I lost my period – well, I was on birth control pills, and then I didn’t get my period back when I came off the birth control pills, and it turns out that it was almost certainly because in the last few months I was taking them, I was getting ready to be pregnant, so I was reading about things to do to help with getting pregnant, and a lot of people were saying, “Lose weight to have an easier chance of pregnancy” or “Lose weight to have a better pregnancy”, “Lose weight, lose weight, lose weight.” And then there were also the aesthetics of losing weight. I felt like there were some parts of my body that weren’t ideal, and people in my lab were going on a diet. It was like everything lined up, so I decided to go on a diet, and I was exercising a ton because I loved it. I still play ice hockey. At the time, I was also playing volleyball and lifting weights and playing squash. Just super, super active.

So I went on this diet. I was significantly under-fuelling for my body’s daily needs, and then I went off the pill and didn’t get my period. That was back in the early 2000s, and there was essentially no publicly available information about HA at the time. I went to my doctor and she said, “Give it three months because there’s post-pill amenorrhea.” I’d actually like to talk about that as well, a little bit.

Chris Sandel: For sure.

Nicola Sykes: So three months came and went and I still didn’t have a period, so then we started doing more investigation, and eventually, I think about 8 months later, she talked to a reproductive endocrinologist and told me that I had hypothalamic amenorrhea. That was the first time I had heard that term.

00:08:45

What is hypothalamic amenorrhea (HA)?

Chris Sandel: Maybe just give a definition, because everyone feels like they’ve caught up and knows what this is, but there’s going to be people listening who are still new to that as a term.

Nicola Sykes: Yes, thank you. It’s funny how when you live in a world, the terms become de rigueur to you and you forget that not everyone knows what you know.

Hypothalamic amenorrhea is missing a menstrual period because of suppression of the hypothalamus. The hypothalamus is a small part of your brain that is kind of like the control centre. It takes in inputs from all sorts of things; it takes in physical inputs like sensors in your oesophagus and your stomach that change when you eat something, just from the stretching of your oesophagus and your stomach, so mechanical sensors. It has sensors for all sorts of different hormones, glucose, insulin, the hormones PYY and another one that’s generated when you eat fat or protein. It has sensors for oestrogen and progesterone and thyroid hormone and all the stress hormones. It basically takes in all these inputs and then sends out other signals to control other parts of our body.

It controls the pituitary gland, and that is the next master regulator of our reproductive system. The pituitary gives off follicle stimulating hormone that then goes to your ovaries and causes your follicles to grow, your eggs to mature, and that leads to ovulation.

When your hypothalamus senses that you aren’t getting enough energy or what have you, it will slow down and basically suppress other parts of your body. One of the top things that it suppresses when you’re under-fuelling is your reproductive system. Hypothalamic amenorrhea is basically a missing period because of the slowdown or shutdown of your hypothalamus.

It sounds kind of technical, but really, it’s basically if you’re under-fuelling or overexercising or extremely stressed – and it’s usually a combination of those three things – then you end up losing your period. It’s basically your body’s cry for help, like “I’m not feeling safe and happy right now, so I’m going to shut things down.” Biological purview, it’s not an ideal time for pregnancy. Our bodies don’t know about all the other things that we do. They know about the pregnancy aspect, and that’s the biological driver of a lot of things that our system does, in hopes of reproduction to continue the species. [laughs] So that’s the background for what HA is.

00:11:29

Nicola’s experience with HA + writing her book

So I was diagnosed with HA. I knew nothing about it. I went out and learned a little bit – not too much. I figured “The doctors know what they’re talking about, so I’ll just listen to them.” And I had asked “Do you think it could be related to my eating or exercise?”, and my doctor said, “Well, maybe you could eat a little bit more and maybe you could exercise a little bit less.” So that’s what I did, because that’s what I was told was the way forward.

Then the reproductive endocrinologist told me, “You’ll probably never have a regular period again because your periods were irregular when you were younger, and who knows.” So I ended up going down the path of fertility treatment. I did four cycles of injectable medication in hopes of getting pregnant. None of them worked very well. There were all sorts of things that went wrong, which is a story for another time. But basically, I didn’t get pregnant.

Finally, we were going to do IVF (in vitro fertilisation) because that is a fertility treatment that has a higher likelihood of success, and they wanted to put me on birth control while I was waiting for things to line up for the treatment. I was like, “Nuh-uh, I’m not going on birth control. I want to be pregnant. That’s crazy.” [laughs] So I did not go on birth control, and I think I had made enough changes by that time – I gained back all the weight I had lost and I had cut down my exercise quite significantly – and in that waiting period, I ovulated on my own and got pregnant. So that was really exciting. I didn’t have to do IVF, although I did for a later kid. Everything had come together.

I ended up going on bedrest while I was pregnant, and then I found a message board online about HA. So I joined that because I had so much free time on my hands, and I got to learn a little bit more about other people’s stories, and I saw the same patterns repeated over and over again. Then that led me to – after a while, people were saying, “You know so much about this. You should write a book.” I looked around and there was nothing available, so I was like, “Yeah, okay, I’m going to do this.”

It was a brand new direction for me. I’d trained in computational biology; I had worked at a biotechnology company in drug development. I just found I was so much more passionate about helping people. When I was deciding about what to do for my education, I considered going to medical school, and then I decided, “No, I don’t want to treat patients.” And here I am, seeing clients almost every day. I call them ‘clients’ instead of patients because I’m not an MD. Sometimes I regret that decision. I would like to be able to prescribe medications for people, which I can’t because I’m not an MD. But I do help guide people in speaking with their doctors, what things to ask for, and that kind of thing.

Chris Sandel: It’s probably a good thing that you didn’t go down the medical school route because you may then have got indoctrinated into that way of thinking around this subject matter and then it wouldn’t have lined up in the way that it did.

Nicola Sykes: Yeah, absolutely. I would like to be able to write prescriptions, though. [laughs]

It took me three years to write the book. I sent out a survey to about 500 of the women that had been on that message board. The survey had 1,000 questions, so it was very comprehensive. I collected that data – because there were so many questions people had that there was nothing in the medical literature and doctors didn’t know. Things like “How long will it take to recover?” and “What hormonal changes can I expect?” and all sorts of things. “What are the physical symptoms? How do those change with working on recovery?” So I incorporated that as well as going into the medical literature and really doing a deep dive on a lot of nuances of HA and learning about how much we actually need to eat in order to really support our body’s daily needs – which is a lot higher than what we’re generally told.

So I put that all into a book. I put everything in there that I know. It starts with “What is HA?” and then moves into recovery and then talks about fertility treatments for pregnancy and really looking at those from the lens of somebody with HA. A lot of the fertility treatments doctors don’t necessarily know the nuances for somebody with HA or coming out of HA, so it incorporates some of that. And then pregnancy and postpartum and living life after recovery. It’s all in the book.

It’s been interesting because I work with people along all different phases of those journeys. Some people that I work with have just discovered they have HA and they’re like “What do I do next?” Other people are well into recovery and maybe still not able to get pregnant, so I can work with them and specifically dealing with the medical system and what the doctors are going to tell them versus what seems to work better for people that have had HA.

I’ve actually had a lot of people coming to me recently who are postpartum and not getting their periods back and wondering “What things might I be doing, what things might I change to get my period back at this stage?”

Chris Sandel: It is an incredibly detailed book. I read it a long time ago. You sent me the most recent update, and I’ve gone through that as well and it’s great. The first two episodes that we did together, we cover a lot of the stuff from that book. We don’t have time to cover all of it, so I want to suggest that people go back and listen to those episodes. I think what will be more useful is looking at how you’ve evolved since those last episodes we recorded and since the prior versions of the book and what’s been added in there now, based on either your clinical experience or more research or just you changing your viewpoint for some other reason.

00:17:29

Why she updated her book twice

Nicola Sykes: I’ve updated the book twice since it was initially published. The first update, I really tried to make the book a little bit less body size focused. When I wrote the book, I was very much still in the mindset of ‘smaller’ – I don’t even like talking about it, really. Just in the typical mindset of ‘larger bodies are not necessarily healthy’. I would talk about, “After you’ve recovered, you can lose weight again.” Eh, I really don’t like the focus on body size and what you look like.

So the first update took out a lot of that kind of language. I changed it to be more Health at Every Size aligned. Not entirely; I do have numbers in there, I talk about BMI a little bit, I talk about the number of calories a little bit. And that’s really because I found that a lot of people, when they came to me initially, they’re like, “I’ll gain a little bit and that’s all I need.” It’s like, “That’s probably not going to be enough. So I just wanted to have some numbers in there so that people had a guideline of “If I’m at X BMI, then I need to go more than I think I might need to.”

The numbers in the book, if you’re interested, you can go there. I just prefer not to – I find that keeping a focus on numbers is really detrimental. I think it really needs to be much more about how your body feels, how your body is operating.

Chris Sandel: I’d also say for you, there was so much of that research focus where you were asking all of these different questions, so it then does make sense to say, “Hey, this percentage of respondents were in this BMI range” or “This is where people typically lost their period.” And that doesn’t say anything that that’s going to happen exactly for you, but it’s useful relevant information to have. And “Hey, we’ve looked at when people are recovering; on average, these are roughly the calories that someone could need”, but again, there’s a huge amount of variation. Because it’s hard to then say you need to eat more or you need to do less exercise because those are very ambiguous words.

It’s that “I’m going to give you some numbers to give a little bit of context here, but we’re not living and dying by these, and we then need to work out what’s important for you.”

Nicola Sykes: Yeah. And certainly around the calorie aspect, I always encourage people, maybe count for a few days so that you have a general idea of where you should be, and then stop counting. One of the things that has been shared with me recently from a client is that she was working with another period recovery coach. That’s part of the change in the landscape since I wrote the book: now this is a thing, being a period recovery coach. But she was saying that she had to take photos of her meals every day and post them on a private account on Instagram, and then this person would check.

I’m not really sure what the goal is there, but keeping the focus on the specific meal and the amount that’s in a specific meal just feels very challenging to me because it’s not getting to the place where you just eat, and you just eat because you enjoy it and you eat because it fuels your body. It’s not about “I have this many macros and I have this many calories and my plate has to look like this.” Different things happen on different days. One day you can eat more and one day you can eat less, and that’s fine.

I think that’s part of what I don’t like about any kind of focus on numbers. It’s like, yeah, you need to know how much you generally need to eat, but you don’t need to be eating that exact amount every single day. You can eat a little bit more one day and a little bit less the next day, and it all comes out in the wash.

Chris Sandel: Also, you’re writing a book for a really wide audience. What I mean by that is yes, everyone who’s reading the book is either struggling with HA themselves or they’re a practitioner, so yes, this is a niche topic, but within that there are a wide array of experiences. So even just hearing what you said there about we don’t necessarily want food to be the focus – for some clients, that is exactly where my focus is, because that’s the most important thing at that stage. And for someone else, we’re past that and we’re looking a lot more at the variety piece or at the psychological flexibility piece of spontaneity and that kind of thing.

It’s hard when you’re writing a book, because otherwise it’s going to turn into 1,200 pages because you’re giving so many different options of “If this is your scenario or this is your scenario…” So it’s a hard task, because whatever you say, someone will be able to “But what about in this scenario?” You walk the line of “I need to talk about this in a general sense”, and if people want to get into even more specifics, that is when you then work with a recovery coach, or that is when you work with you or me, depending on what’s important and relevant for that person.

Nicola Sykes: Yeah. The second update of the book was two major things. One was just making the book less pregnancy-focused. When I first wrote the book, I experienced HA in the realm of trying to get pregnant. That was the place that a lot of people on the board were coming from. There was no sense, back when I wrote the book or in the early 2000s when I was experiencing HA, that not having a period was problematic. It only becomes a problem when you want to get pregnant, and you can’t get pregnant when you’re not ovulating and having a period.

So when I first wrote the book, it was very pregnancy-focused. But there are a lot of people now – younger people, people who maybe don’t ever want to get pregnant, but understand that having a menstrual cycle is actually quite important for us, for our overall wellbeing, and also as a sign of our overall wellbeing. So it’s twofold there.

So I made it a lot less pregnancy-focused in this iteration. There’s still plenty of information about pregnancy, but the goal in the first section is really about period restoration and health restoration and not so much about pregnancy, just so that it’s for more of a broad audience.

Chris Sandel: Is that also because there’s been a shift in people who are searching for this information from a demographic standpoint? I think, as you said, for a lot of people, the thing that has alerted them to the fact that they’re not getting their period is the fact that “I’m now trying to get pregnant and I’ve just come off birth control and it’s not happening for me. My period hasn’t come back” – versus now, it’s a lot younger people or all across the age spectrum where this has become more of a thing.

Nicola Sykes: Yes, absolutely. Not everybody wants to get pregnant, so taking away that focus and just making it more about the actual process of recovery I felt was a useful thing to do.

And the other thing is I made it a little bit less gendered, just recognising that there can be people who were assigned female at birth who maybe don’t fit that mould anymore, they’re nonbinary or even trans, and they can also experience hypothalamic amenorrhea. Rather than saying ‘women’ and using gendered words everywhere, I just made it a little bit less gender-focused. That was important for me. I want to support everybody across the spectrum in feeling safe and happy in the body that you’re in. It just felt right to me to make those changes.

Chris Sandel: Cool, that makes sense.

00:25:37

How the HA recovery space has changed

I want to talk to you about how it feels like the recovery space has changed over this time, because I’ve noticed quite a few changes, but I would love to hear from you and what you’ve noticed, and then we can get into the contraceptive piece.

Nicola Sykes: There’s so much more awareness these days of the importance of having a period. And not just a period. The period is the physical act of bleeding; it’s not actually what’s important. The important thing is the ovulation, which comes somewhere between one and two weeks before the period depending on various factors. I think there’s more awareness that it is important to be ovulating regularly, that there are a lot of benefits that those hormonal changes have for us.

Many fewer people are coming to me saying, “My doctor didn’t think it was important that I had a period and just go on birth control.” I’m really noticing that a lot more physicians these days are saying, “You probably need to be eating more and you probably need to be cutting your exercise.” They may not be giving specific guidelines, still, but at least I think there’s a lot more awareness in the medical community that this is a problem.

Some of that comes, possibly, from my work and people going to their doctors and saying, “I read about this. What do you think?” There has also been more research in the area and the development of the paradigm of the relative energy deficiency in sport – which is essentially HA; it’s just that the amenorrhea is a symptom of relative energy deficiency in sport. RED-S is the shortened version of that. So amenorrhea is one symptom. In my book, I talk about all the other things that can be happening: GI distress and anxiety and trouble with hair and nails and all those things. Those all fall under the umbrella of RED-S; it’s just another way of talking about it.

But there is a lot more research going on. There’s been more funding for research. It’s actually been an expanding space, which is really wonderful. It’s nice to see that this issue has gotten some more attention in the scientific and medical communities, and we’re learning more.

Oh, I do want to plug a new study that I’m actually hopefully going to participate in. It’s run through the Mayo Clinic. It’s HA Registry. You can learn more about it at the link noperiod.info/registry and sign up at noperiod.info/REVEAL, which is the name of the study. It’s basically just the Mayo Clinic is collecting people who have HA. You’ll get a survey. It’s all survey-based, but you can also get a blood kit to actually send in and get your hormone levels tested so you can have a confirmation of your diagnosis through that methodology.

It’s just to have a collection of people who have experienced HA so that we can ask questions about recovery, some of the more long-term questions. A lot of people are coming to me now – I’m 50 now, so I’m perimenopausal, my last period was two months ago, so maybe menopause, I don’t know. Not quite there yet. But we don’t know if there’s been any impact of having had HA on the timing of menopause or how menopause feels, anything like that. This kind of registry will help us with answering those sorts of questions. So if any of your listeners currently have HA, please go check that out and sign up, because I think the more people we can get, the better.

Chris Sandel: Perfect. I’ll definitely put those links in the show notes. In some sense, it sounds like they’re wanting to do what you did on a small scale en masse. So rather than have 500 people on a message board, can we get 10,000, 100,000, whatever it ends up being, so we can start to look at it and have it be more of a longitudinal study? As you say, it would be really interesting to have a look at what does happen in terms of menopause. Is it earlier that menopause occurs because of HA? Does it have no impact? It would be really interesting to have that information.

Nicola Sykes: And then outside of that, there’s a lot more awareness on social media about the impact of periods. As I said, there have been a lot of people who have seen the value in encouraging people to live a life that’s not constrained by food and exercise, where food and exercise are part of your life but not your whole life. As I said, there are a lot of period recovery coaches out there these days, which I think is fabulous. I think the more people we have that are helping to guide others through this process, the better.

There are some things that I hear people tell me that their coach says this, that, or the other thing, and it drives me a little bit batty, but I think all in all, it is beneficial to have more people working in this area.

Chris Sandel: Yeah, I’m in agreement up until a point. There’s a big part of me that sees that this has been an avenue that a lot of people have gone into, and a lot of people have gone into it that still have some disordered stuff of their own that is going on. It’s typically someone who recovered from HA and then becomes a coach. It’s rare – and I know I’m the rare person to have not had an eating disorder and yet do this work – but for a lot of the recovery coaches, or I’d even say most, it’s a similar situation to you: “I didn’t have my period, I got it back, I learnt some stuff, and now I want to teach some people.” Some people go into a lot more detail in terms of learning stuff, like you have, and other people do less level of detail.

00:31:34

Recognising eating disorders in the HA recovery space

But I think the problem that I see is that you can get your period back and still have some very disordered stuff around food, around your body, around exercise, and that then has an impact on how you coach people and the information that you give out in terms of, do you need to take time off from exercise? Or what should be the upper limit in terms of the amount of calories someone should take in? Or a whole host of other questions that someone has, and that then has an impact on all of the people that they work with, all of the information that they put out.

I know I have my biases. We all do. And since we did our first podcast nearly 8 years ago, I’ve gone a lot more down the route of eating disorders than I was before, with probably a lot more dieting, disordered eating, some eating disorders, and now it’s really all working, all of the time, with people with eating disorders and longstanding eating disorders. And my big worry in that HA community – and I’m talking globally – is that there are a lot of people who are using the label of “I diet or I use disordered eating or I’ve got a bit of a complicated relationship with exercise” when the actual correct descriptor is “No, you have an eating disorder.”

I think there’s a lot of that that’s going on. “I just need to do what I need to do to get my period back and everything will be fine.” It’s like, you’re missing the forest for the trees. This is one small symptom in this vast array of other symptoms that are going on, and you just getting back your period is not going to repair everything you think it’s going to repair. That’s my concern with a lot of the HA recovery space: people are missing the seriousness of it. It’s great that people understand the seriousness of getting a period, but I think people need to understand the seriousness of not having an eating disorder, and recognising “I do have an eating disorder.”

Nicola Sykes: Yeah. I think that’s really challenging. I’ve had some people say to me, “Everybody in my support group has an eating disorder.” And I don’t know; the definition of an eating disorder is challenging.

Chris Sandel: Let me just say, I’m not going to make a black-and-white statement like “Everyone in your group has it” because I don’t think that is true, either. I just think it’s happening to a much higher degree than most people are aware of.

Nicola Sykes: Are there pointers that you look at that would have you more concerned with a particular person than not? What are the things that would raise a red flag for you?

Chris Sandel: I guess it’s a hard one because these things happen on a continuum. Any time I’m working with someone, I’m going through a very detailed form to understand what’s going on. If they’ve got bloodwork done, I’m going through the bloodwork. In so many cases, you learn the seriousness by “What’s your ability like to do the opposite?” Because from my perspective, eating disorders are anxiety disorders, and they’re about avoidance. The more challenge that someone has in saying “I can recognise that this is a problem. I’m going to stop it” – the more challenge someone has with that is probably an indicator that this is something that’s more serious.

And the reality is, I don’t really care about a label. When I say “I think more people have eating disorders”, it’s not because I want to give them that label. It’s more recognising the seriousness of what’s going on and that it’s not just about “I’m doing a little too much exercise” or “I’m just eating a little less than I should be.” It’s like, no, this is having more of an impact than just that.

So it’s hard for me to give you a clear answer of “if these things are happening”, but it’s typically that you’re not just missing your period. There are all of these other pieces that are going on that is having an impact in terms of your body having to turn things off and turn things down.

And even with the RED-S stuff, I love that there’s more attention on it, but even with that – for anyone who doesn’t know, RED-S was brought in to replace the old female athlete triad. They did that for a number of reasons; one, because they recognised that it didn’t just affect females or women, but two, they realised it wasn’t just about a triad of things. This was affecting all of the different symptoms and systems of the body.

But what I’ve seen happen with this is that RED-S becomes the thing in the middle, so the energy is the thing that’s driving it, and then there’s all of these other areas it affects. It basically just lists all the different systems within the body. Which is fine, because I totally believe that eating disorders are about being in a low-energy state, but then there’s this one little box that says ‘psychological’, and I think that’s doing a disservice to how much this isn’t just one of the other spokes – that actually, this is a really big component of it. I think it then minimizes that part of it, like yeah, the energy piece is the thing that’s driving it, but there’s this other thing that is creating that situation.

00:37:15

Issues with fear-based tactics + perfectionism during recovery

Nicola Sykes: Yeah. I think the other thing that has me on edge about some of the period recovery space is there’s a lot of fear. Fear is what drives diet culture. We’re told to be afraid of being in a certain body size and afraid of the health impacts, so that leads to fear of food, fear of gluten and fear of dairy and fear of carbs. It’s fear. Fear sells. That’s what it comes down to. Fear sells.

In working with people on period recovery, I really try and base our work on encouragement and support and giving people accurate information, letting them make choices. People can decide if they want to take longer or less time, all of that. Everybody’s different. Everybody has their own journey. I’ve been hearing about people who are saying, “You need to eat this way for the rest of your life and if you don’t you’re going to lose your period, and you have to worry, worry, worry every month about are you still going to have your period, are you doing the right things.”

I feel like our bodies are quite resilient, so once we’re in a space where we’re fuelling our bodies well and we’re moving for the ‘right reasons’, not exercising every single day because if you don’t exercise, then things are going to fall apart, allowing yourself to take time off when you need to, all of those things – our bodies will settle down. I don’t think about my period at all except for the fact that I’m perimenopausal, so I’ve had six or seven 21-day cycles. It’s like, okay, fine, I have a 21-day cycle. That’s where I’m at.

There’s this feeling that your cycle has to be perfect and that everything has to be perfect, and I think that really speaks to what you were just talking about. I really push people to get away from the idea of perfection. Perfection is not necessary in pretty much anything in life. When you’re searching for perfection, I think it really puts so much pressure and stress on us. So I really encourage people, sometimes your cycle is going to be 28 days, sometimes it might be 30. You might get sick and maybe you miss an ovulation. That’s all normal and expected. I think there’s this message that if your cycle isn’t 28 days, something’s wrong, and I don’t really agree with that.

I really, really dislike the use of fear to try and get people to buy something, to do something. I think that’s part of what I see as a problem in the period recovery space, and honestly, life in general. [laughs]

Chris Sandel: Yeah. It’s a hard one because there’s times where – especially if I’m thinking about eating disorder recovery – I don’t think I want to use ‘fear’, but I want someone to be in touch with the reality of the situation. Like, “Let’s have a look at what’s going on in your life right now, because you’re saying you feel like everything’s fine and you don’t need to recover, but let’s look at, are you able to do these handful of things? Are you still getting these symptoms? This would indicate that maybe there is still some work to be done in terms of your recovery.”

From that side, it feels like we’re not using fear; we’re just trying to side-step the eating disorder thoughts and bring some reality in here. But I do agree with you, because there’s no point telling someone, “This is going to be the worst thing, and in your seventies you’re going to be so regretting this and all the damage it’s going to do to your bones and maybe you’ll get Alzheimer’s.” That just doesn’t work. Apart from the fact that it makes people miserable and feel lousy about themselves, it also doesn’t work as a way of getting someone to change. Maybe they do that on Day 1, but after Day 2, Day 3, Week 3, Week 4, it just stops working.

Nicola Sykes: Yeah. And I think it’s important to have an accurate understanding of those things, like yes, those can happen – but also, a lot of the consequences of HA specifically are reversible. There’s so much that our bodies can do to repair and restore and come back to an equilibrium that I think it’s good to know that if you continue – it’s tough. I think it’s really the search for perfection that I have a problem with, and the idea that perfection is the goal.

Chris Sandel: Yeah, which again, possibly speaks to if someone was to become a recovery coach after recovering from their own HA stuff and they’re being very evangelical about this kind of perfectionism, it’s probably telling us about that person and how they feel about those things, and that’s then having an impact on the way that they coach. Because yes, I think there is a lot of overlap between someone who develops HA and perfectionism or someone who develops an eating disorder and perfectionism. It’s not always the case; that’s often the case of what does happen.

What else have you noticed in this space over the last however many years?

Nicola Sykes: I’ve taken a few years – I’ve stepped back for a few years because of things going on in my personal life, so I’m really just coming back into working in the space again at the moment. So I don’t think there’s anything else that comes to mind right now.

00:42:46

Getting your period back doesn’t mean recovery is done

Chris Sandel: The only other thing that I want to mention – I don’t know if it’s connected to this, but it’s front of mind because I see it happen so often, and it’s the reminder that just because you’ve got your period back, does not tell you that everything is done.

Nicola Sykes: Oh, absolutely.

Chris Sandel: This is a real mistake – and people have been definitely told this, like “Once you get your period, you don’t need to gain any more weight” or “You can now go straight back to exercise” or “You don’t need to be eating what you were eating before”, all of this stuff. I really want people to get that all that has happened is your body has changed so that there are now certain hormones that are being produced at a level that mean that you are bleeding. It doesn’t necessarily mean that you’re ovulating; all it means is that you’re getting a period.

If your body is looking at all the things that it needs to do and there’s 100 things, the 100th thing is not getting your period back. It’s not the last thing your body will ever do. There can be a lot more repair that still needs to take place even if you’ve got your period to come back.

Nicola Sykes: Absolutely. Two things come to mind as you say that. One is I really, really, really encourage people to learn about ovulation tracking and track your ovulation going forward. It’s useful really for the rest of your life. It’s useful for understanding how your body is reacting to any changes that you’re making with exercise or eating after recovery. It’s useful if you’re trying to get pregnant or avoid pregnancy. It’s useful as you get older for understanding what’s going on with your cycle in perimenopause or what have you. It’s just a good barometer, much better than your period. Because as you say, you can get your period without ovulating, and if you’re not ovulating but you’re getting a bleed, there’s something that your body is trying to tell you. So it’s really, really useful information.

And yes, absolutely, some people get their period back fairly early on in recovery, and we’re all different. We all have genetic differences. I think that’s actually a fairly big driver of that difference in people: some of us have much more robust reproductive systems than others. There are proteins that bind to other proteins in our brains, in our bodies. If you have a little bit of a mismatch, which is like single nucleotide polymorphisms – it’s very scientific, but basically, it’s just what makes each of us a different person. Your ancestors have slightly different changes in their DNA from my ancestors, and that might make my reproductive system more sensitive, so that means I lose my period more easily and I get it back more slowly. Somebody else might have a much more robust system, so if they’re coming back from HA, they get their period back quite early because their proteins all match together really well, so as soon as things are even close to the way that they should be, it all works together.

I completely agree with you; I continue to encourage people to really work toward the freedom from rules around food and exercise, understanding that a well-nourished body operates best. That means just generally eating enough most days. And same thing with exercise. Exercise is really, really healthy for us. It’s so good for us – when it’s on the background of a well-nourished body. Exercise in an undernourished body maybe is causing more problems than it’s solving. But for the long term, I think exercise is great. But if you feel like you must exercise every day or something bad is going to happen, that’s definitely something that needs continual ongoing work, because we do know that you don’t have to exercise every day.

It’s generally being well-nourished, it’s generally moving your body, and that’s where you’ll find a place of both physical health and – I mean, obviously there are other issues that can be happening, like disease states and what have you, as a general marker. And mental health. I think the anxiety that comes around having food and exercise rules is really challenging for people, and I think that is part of recovery as well: getting to a place where if something unexpected happens in your day and you don’t get to eat the things you were planning on, no big deal. And if it is a big deal for you, then I think that is something that you will benefit from working on.

Chris Sandel: Yeah. I think with so much of this stuff, context matters. There are points where – you talked about that exercise is a very healthy thing, and I completely agree with you. If someone is well-nourished, well-rested, is taking enough energy so that the body can repair and actually adapt from the exercise, that’s wonderful.

And when the body’s not in that state, then it’s not helpful. The guy who’s just broken both his legs, we’re not saying, “Hey, let’s talk about the importance of getting 10,000 steps in.” This is the wrong context. Let’s focus on your legs being able to heal, and then once they’ve healed, then we can have a conversation around what could be appropriate exercise for you. And at that stage, we’re probably going to need to do some rehab so that those legs start to work properly and then build up to that thing.

I think so often, that gets lost or forgotten or gets twisted, and people only hear what they want to hear, or the eating disorder will only let someone hear what they want to hear or whatever it may be. I do think the context piece with all of this is super important.

Nicola Sykes: Yes, absolutely.

00:48:24

Contraception after recovering from HA

Chris Sandel: Let’s talk about reproduction and contraceptives, because this is something you said you’d like to cover, and I think you’ve been writing a chapter of a book or a course or something or other, so tell us more as a bit of a setup, and then we can get into it.

Nicola Sykes: Yes. I’ve had a lot of people come to me after HA just wondering what they might use for contraception. People generally have this negative feeling about the hormonal birth control because a lot of people, when they went to the doctor and said “I’m not getting my period”, they’re like “Here, have the birth control. Go on the pill, it’ll give you a period, it’ll make everything better.” A lot of people are put on birth control pills at a fairly young age for acne or period regulation – or for contraception. There can be valid reasons for using birth control. It shouldn’t be used as a band-aid, in my humble opinion. We should figure out what’s going on that’s causing you to have irregular or absent menstrual cycles rather than just throwing the birth control pill at you.

Anyway, people were coming to me after having recovered their period and wondering what they might use for contraception. I’ve done a fair bit of research into the different types of contraception that are available for that reason.

When I was working with Florence and Margaret and a whole bunch of other people to translate the book into French and German, I decided to add in a chapter about contraception. The French and German versions don’t have the section on fertility treatments and pregnancy and postpartum because that felt like a lot to translate all at once. I mean, the book is quite big. So we ended up doing a smaller volume more talking about HA recovery and what you need to understand about a menstrual cycle and all of that. So I added the contraception chapter into that.

I haven’t yet put it into the English version, so what I’m thinking is that I will publish it as a separate little eBook or book so that people who’ve already got the book can just have the section on contraception, and hopefully it’ll be more widely available. My German translators actually said that they would like it as a separate standalone thing because they have friends coming to them and saying, “What should I do about contraception?”, and they want to be able to provide this information to them.

I go through in this book – we’ll call it a book; I keep calling it a chapter because that was its origin, but I am going to publish it as a separate book – I go through all the different types of contraception. There’s non-hormonal contraception, there’s hormonal contraception. Some of the hormonal contraceptives, like the hormonal IUD, for example, I had myself for about 10 years. It’s not unusual to ovulate while you have the IUD, so you can still get the benefits of the oestradiol and progesterone changes from a menstrual cycle but also have the contraceptive effects.

The IUD in particular thins the uterine lining so that you have very little bleeding. Periods can be a little messy and challenging, so if you’re on a contraceptive that can have you still ovulating but not bleeding, that seems like not the worst thing in the world to me.

So I really lay out all the different options, how they affect your ovulation, how they might affect your bone density – because that’s particularly important for somebody that might have had HA for a long time, starting at a young age, and does have perhaps lower bone density. Just thinking about all the different types of possible methods of contraception from that lens of, are you still ovulating? Can you still ovulate? What happens with your bone density? Just really giving people that information so that they can make a choice for themselves.

I also think it’s really important to be having this discussion with your doctor so that you can get more information from them as well, because obviously, there’s so much out there about contraception; I can’t possibly include everything. But just talking about some of the side effects and known side effects, and what might be less well-known but I think it’s important for people to know about. There’s the potential for blood clots. There’s potential for depression. There’s potential for some nutritional deficiencies. Maybe some androgen-related changes. That’s very up in the air.

I just lay all of that out for people to understand and make a choice that works for them and where they are in their life, and whether they’re trying to conceive or not trying to conceive. I mean, obviously you’re not on birth control if you’re trying to conceive, but maybe if it’s in the near term future versus the longer term future, that kind of thing.

Chris Sandel: Sounds great. I’ll look forward to when that comes out. My French and German is not up to par, so I’ll need that to be in English.

I want to talk about some of the research connected to this, but just for people listening, you’ve given some little tips in terms of the hormonal IUD that people might not know of. Is there anything else that you can think of that comes to mind that you’re like “Hey, I would really love your listeners to walk away with this fact or this thing that either I didn’t know and this was really great as part of my research, or I know this but not many other people seem to know this, or this is the thing people are always so interested about when they do find out”? Anything that comes to mind?

Nicola Sykes: One thing that I didn’t know until recently was for the birth control pills, if somebody is choosing to take birth control pills, it is much better from the perspective of your body to actually take the extended birth control pill, the continuous. You’re either on it continuously or I think maybe there’s maybe a 7-day break out of 3 months. So rather than taking a break every month, it seems to be better to be on the birth control pill as much as possible.

The rationale for that is that it’s supplying your body with oestradiol and progesterone, or maybe just progesterone, but it’s doing that – if you’re taking a week break at it every month, that’s 25% of the time that you’re not getting that support for your bones or your brain or whatever it is. So being on it continuously basically keeps your hormones a little bit more stable and seems to be better, particularly for bone density. Being on the continuous birth control, if that’s your choice, seems to be about as good for you as being on hormone replacement therapy with the bioidentical hormones.

The bioidentical hormones, you’re generally not supposed to use those as birth control because you can ovulate while you’re on them – although somebody who has HA is not ovulating on any of these things. The ovulation piece of it on any of these hormones is obviously once you’ve recovered your menstrual cycle and restored that.

But there can be times when people want to be on the birth control pill, so just know that the continuous is probably better for you than taking that week break every month. From historical purposes, when the birth controls were originally designed, it was so that people didn’t worry about whether they were pregnant or not. You still got your monthly bleed. There’s no real purpose for that bleed anymore. Does that make sense?

Chris Sandel: It does, and it surprises me. The reason it surprises me is if I think of that gap week – and for anyone taking the pill, the last week of pills is just the placebo pill, correct? It’s the one that doesn’t have anything in it.

Nicola Sykes: Yes.

Chris Sandel: I thought that part of the rationale was that you’re in some way mapping what happens when you do get a normal menstrual cycle. Part of the reason you get the bleed is because your progesterone and oestrogen have dropped down enough that it’s not sustaining that uterine lining, and the uterine lining then sheds. So by having this week of doing that, you’re trying to mimic the body, and that’s a good thing because that’s what happens naturally, or however you want to phrase it.

Nicola Sykes: There’s actually no real benefit to shedding your uterine lining. It’s constantly restoring and renewing and regenerating. There’s no ‘old’ lining. You never think about having to shed the lining of your gut, right? It’s the same thing. The cells are constantly breaking down and rebuilding and all of that. So you don’t need a bleed for any cleanout purposes or anything like that.

Really, the focus on getting your period back is not about the bleed; it’s about the hormonal changes that come with ovulation. That’s what’s important. So when you’re on the continuous birth control pill, it’s not the same as having a natural cycle, but the hormones are enough to maintain your bone density, which is important for some people.

Contraception is important. I think it is really being able to control when you get pregnant. It’s just opened up so much of the world to people with a uterus. I think there is a lot of negativity around hormonal contraception. I think it’s warranted in some ways and not warranted in other ways. I think the hormonal contraceptives can be really useful for people, so denigrating them as a broad category can take away some options for people.

Another option is the copper IUD. The copper IUD, you do continue to ovulate. I think there are probably slightly fewer downsides to the copper IUD, but it can make your menstrual bleeds much heavier, so that can present a challenge for some people. I personally chose the Mirena because I’ve not had bad experiences with hormonal birth control in the past, other than the misinformation about – no, I really can’t say it. I haven’t had negative experiences with hormonal birth control personally. Some people have.

So there are options, but I chose the Mirena because I liked the idea of not having a monthly menstrual bleed – which sounds kind of crazy for somebody who’s helping people get their periods back, but as I’ve been saying, it’s not the bleed itself that’s important. And I really liked that I continued to ovulate but didn’t have the mess and bother of the monthly bleed.

It’s nice not to have to worry about condoms or a diaphragm, although those can certainly be useful for people who don’t want to be on hormonal birth control or the copper IUD. It’s just nice to have a good sense of what all the different options are and recognise that hormonal birth control can be right for some people, and it’s not right for everybody, and there are lots of options.

I really just try to make the information as accessible as possible without putting my bias onto the user.

01:00:03

Nicola’s process for finding valid, reliable research

Chris Sandel: For sure. I think it would be useful to chat about the research part of it. I don’t know what’s the best way to phrase this as a question, so I’m happy for you to take it in some direction if you want to answer it slightly differently, but how do you work this out? When you’re looking at research, how are you going through it? Not all studies are created equal, so how do you figure out, “This one I’m putting a lot more faith in” – not faith, I don’t need faith – “The information it contains is telling me everything I need to know” versus “This is dubious, and there are these questions that aren’t really answered” or “I don’t like that they’ve done this type of analysis because of the way that it can skew this thing or that thing.”

I’m not a researcher. I know that I have certain limitations around things, which is in a sense why, a lot of the time, I’m outsourcing that to people that I trust. So for you, who is doing a lot of that interpretation of the research, what’s your process or how do you determine these things?

Nicola Sykes: I love that question. When I’m looking into a topic, I’ll go into the medical literature; I go to PubMed and do a global search and I see what comes up. I’ll usually start by reading what’s called a review article. That’s basically somebody who works in the field who’s taken a look at a wide variety of the published literature and synthesized it. They do a lot of the work for you.

What I like about review articles is that they might have a focus, but they go through research on different sides of an issue. On hormonal birth control, for example, I like the review because it points me in the different directions that might be important to look at, gives me a good idea of what research is already out there and a summary of what these particular scientists think is the right path forward.

I do think there’s a little bit of faith involved. I do think our knowledge is constantly evolving. I don’t think that there is ground truth. I mean, there obviously is ground truth, but we don’t necessarily know what that is. We’re constantly learning, we’re constantly figuring out new things. I just saw a Facebook post of people from my high school who were saying, “Remember when there was a smoking room?” I’m like, oh my God, I can’t imagine there being smoking in my children’s high school. But different times. We know a lot more about smoking now than we did back then.

So I’ll start with a review article, and then if there’s specific things I’m interested in, I’ll do a little bit of a deeper dive into looking at studies that focus specifically on that one aspect.

I tend to look at meta analyses. These are basically articles where they’ve collected the data from a number of different studies and analysed all of those data together. That helps take out some of the individual study bias, so you’re looking at “Over these 10 studies or these 15 studies, what’s the overall conclusion that I can draw from all of these different people, all these different research subjects, all these different ways of running the experiment?” That is a place where I feel reasonably confident when I’m looking at a meta analysis that this is probably right. Again, not always, because we can get things wrong. Depending on how the experiment is run, how the study is run, you might be introducing bias.

I think the meta analyses are the best place to look to have the least biased answer about what we know today. Individual studies, I think the type of study that gives us the best answer are the double-blind studies. Those are where neither the researchers nor the patients/subjects know which formulation they’re being given, because if you know, then you can have ideas in mind about what might happen. You might be more likely to report a specific type of side effect if you know that you’re on a medication and it might have these types of side effects. There’s some cognitive bias that can come into play. So double-blind studies are best.

But I like to go and look at a couple of different studies, because you don’t always get – each researcher has their own bias, so they might be reporting the data in a certain way. Looking at a couple of different research groups can really help you to figure out, is this generally true? Is it only true in this one instance? And why might that be?

Then the data that I like least is anecdotal data. One person comes along and says, “Hey, this happened to me.” Trying to draw any kind of cause and effect from one individual person’s story I think is really challenging.

For example, with contraception, I came across an Instagram post recently where the person had posted – they didn’t even post that, they posted that there was evidence of the hormonal IUD causing things that are related to androgen, so increased hairiness, increased acne, more hair loss on your head, increased hairiness in other places. Some of the things that might be symptoms of PCOS or just general having too many androgens in a female body.

So this person said, “Message me, write ‘IUD’ to get more information.” She actually did share the study, which kudos on that; the study said there’s a tenfold increase in these side effects – hirsutism was the one in particular – in people with a hormonal IUD over a copper IUD. I was like, what? That seems crazy, because that’s suggesting that there’s all these people out there that are having hirsutism from the hormonal IUD, and I’ve never even heard of that.

I looked at the study itself, and it was based on a database where people report side effects of medications. They compared the number of reports of these androgen-related issues from people with hormonal IUDs versus copper IUDs. They’re saying there’s a tenfold higher rate, and I’m like, no, no, no, you can’t say that because you don’t know who is reporting. You don’t know that there’s any kind of cause and effect. The idea that there is a tenfold higher rate of these things doesn’t hold water.

It could be the case that because it’s a hormonal IUD, people have this idea that there might be hormonal symptoms, so they notice a little bit of extra hair on their chin and they think, “Oh, that’s because of the IUD” so they go and report it. Whereas somebody with a copper IUD who might notice a little bit of extra hair on their chin doesn’t have this bias that it might be related to the IUD, so they don’t bother reporting it.

I think that using user reports can be a place where you can get an idea of something to look at in controlled studies, but you can’t say that there’s a tenfold higher rate of hirsutism just because you don’t know who’s reporting. There’s so much that’s unknown and uncontrolled. That kind of thing really sets my teeth on edge.

Also, the article was not published in a peer-reviewed journal, so that means it hasn’t been looked at by other scientists. There’s a general anti-science bias in the world at the moment, but I do think there is value to having people who’ve been trained to look at “These are the kinds of things that can make a good study and these are the kinds of things that make a more suspect study, and how have we done on those markers.” I think that’s my general method of looking at the data that I come across.

Chris Sandel: On that last piece, would that last piece of evidence be something you consider preliminary, a study where you’re like “This seems interesting; now let’s put this into the double-blind controlled study to actually get a sense of, does this cause what it looks like it may be causing? Because at this stage we need more information”?

Nicola Sykes: Yes. It is something that I mentioned in the contraception chapter because it is a possibility – and I did actually find a research study that looked at hormone levels of people on the hormonal implant – I think it was the Depo-Provera shot and the copper IUD. And they did find that there was an increase in free testosterone in people who had the hormonal implant. That is a mechanism by which there might be these changes, so I did include it in my chapter because of that.

There’s also a difference between the implant and the IUD, and the implant has a higher amount of hormones and it’s a more systemically acting versus locally acting IUD, so there is a difference there.

I like to share information but put a little bit of caveat around it rather than saying “Oh my gosh, you should have your hormonal IUD taken out right now because you might get a little bit of extra hair.” No, not so much. I think that, as you said before, it’s context. We all have different experiences with medications. We all have different metabolism of different medications. Everybody’s unique and different, so you take this global idea of “What do we generally know?” and then figure out what works best for you.

01:10:28

Tips for determining the accuracy of studies posted online

Chris Sandel: As the consumer, then, of that Instagram post that you alluded to, what suggestions are you making to a consumer of that to how they can figure this thing out? Because not everyone is a researcher. The vast majority of people aren’t researchers, and it’s then very hard when someone sees a post like that – especially if it’s a post from someone who’s credible.

I see so much online about Huberman and his podcast. It’s absolutely ginormous in the science/health sphere, and so many people love him; so many people have real negative things to say about how he’s not doing proper science and he’s running away with some very preliminary research. It’s hard when there is this authority bias. Like, “This person works at Stanford, for example, so he should know this stuff, and he’s really smart, so we should believe him.” I imagine that there’s a lot of people who are doing the same thing on Instagram that you’re talking about.

So as a consumer, is there any advice you would give to say how you start to determine whether this is accurate or not?

Nicola Sykes: I think things that are super surprising are less likely to be valid, honestly. [laughs] I think if something really surprises you, if something seems outrageous, then it’s definitely worth digging in a little bit more and seeing, where is this coming from? Is there other evidence that’s provided?

Even looking at the comments and just seeing – I commented on this post that I think it would’ve been useful to provide this kind of information. But yeah, it’s really hard. I think it’s on the people who are authorities to really provide their sources, to talk about “This is why I think this is interesting. These are some of the caveats around it.” I think that is really important. I always try and put in caveats when I’m sharing things that I’m maybe not certain about.

It is a really challenging question. Knowing that this hierarchy of studies – peer-reviewed studies are definitely more likely to be accurate than things that are just posted online. If somebody’s not providing sources, that really gets my hackles up. I think if you’re going to talk about something that you’ve learned, tell people where you found it so that other people can go and check you. If you’re just sharing “This is something new” and you don’t give any background or any sources, that definitely makes me more suspicious.

There’s a fair bit of science journalism that doesn’t share studies, so I’m much more sceptical of those. If you’re not going to tell me where you got this information, eh, I look at it with a much more sceptical eye. I really like when science writers link to the studies they’re talking about so that I can go and look at the study if I want to. Do I always? No. But if I’m like “That doesn’t make sense”, then I can go and look at it versus having to go and figure out what study they’re even talking about.

So I think providing sources is something, at least, that your general layperson can look at and be like “Okay, they have sources that I could go and look at or somebody else can go and look at” versus just making statements that “Where did that come from?”

Chris Sandel: For sure. I guess my knee-jerk reaction when you said if something seems surprising, maybe not – I think that’s how most people think about Health at Every Size. That’s their knee-jerk reaction of “Hang on, we’ve been told for so long that being overweight or obese or whatever term people want to use is so unhealthy, and you’re now telling me that that’s not the case or they shouldn’t be focused on losing weight?” I think that in that instance, there is something that is going to be very surprising for someone to hear that the first time.

Nicola Sykes: But there’s also a lot of studies that you can point to, to back it up.

Chris Sandel: Totally.

Nicola Sykes: It’s not just one study. It’s not just one Instagram post. There’s a lot. I think that’s what I was trying to get at with the meta analysis and looking at what the general research sense is. I mean, obviously there’s a lot of research that is on the side of ‘larger bodies equals unhealthy’. There is a lot of scientific research that purports to support that.

But that’s where we’re in this process of evolution, and why I say there is a ground truth in that there is the underlying biology, and whatever it is, it is. But our understanding of that, I don’t think there is ‘truth’. I think there’s things that have more evidentiary support and things that have less evidentiary support and things that have absolutely no evidentiary support, and those are the ones that you can probably throw away.

There’s a lot of hubris in the scientific community that I think can be off-putting, and I think is misplaced a little bit. I took a course when I was doing my PhD on reading and understanding medical literature. We were guided through a number of different articles. Look at, what are the strong points of this article? What are the strong points of the research? Where are their failures? What things are they missing? Where did they go wrong? We’re all taught that.

But then you layer on humanity above that, and people’s goals and choices and who’s paying them – that’s not unreasonable to look at. We all have biases, so really understanding where those biases might be coming from, each of us doing our best to share what our biases are and control for them, but obviously we can’t – we’re all humans. We’re doing the best we can.

Chris Sandel: Yeah, and I think as humans, we have this tendency to want this very simple answer, and there are situations where the simple answer is actually the right answer. But for a lot of things that’s just not the case. When we’re looking at the things that are contributing to one’s health, there are thousands of things. Literally thousands of things that are having an impact on that. To say that it’s all because of sugar or it’s all because of gluten or it’s all because of weight – none of those statements are true. I think we run into problems when we’re trying to get into this very reductionist way.

And even with myself, I talk about eating disorders being low-energy issues and that when you get in a low-energy state, these things happen. And that is a big component of it and a big driver, but there are so many other pieces that are there, and if I’m saying that’s the only thing, then we’re really missing some stuff here. I like the “Let’s have a caveat, let’s be context-specific, let’s think about, where are the edge cases? Where does this thing start to break down and now this thing isn’t actually true?” That for me is always quite fascinating. Like, “What about this scenario? Let’s find that.”

And look, for someone recovering from an eating disorder, going through some of those thought experiments might not be the greatest thing to do. Your eating disorder is already prompting that kind of thinking that then gets in the way of action-taking. But I think there are situations where it is really useful to notice that there could be 10-12 explanations for this thing as opposed to just the one.

Nicola Sykes: Yeah, and also nuance and complexity. We want things to be left or right, up or down, but there is all that space in between. I think we really need to be aware of that and the fact that everything is on a spectrum.

Certainly with hypothalamic amenorrhea, your hypothalamus operates on a spectrum. You can have a completely working hypothalamus, very regular, normal menstrual cycles; you can have somebody who’s hormonally recovered so their FSH and LH are normal, but they’re just not getting the signal to start the follicular growth process. I put that right next to the normal working hypothalamus. You can have a hypothalamus that’s slightly suppressed, so it doesn’t take too much work to get back to normal. You can have a hypothalamus that’s super suppressed. That’s totally on a continuum. All of biology is on a continuum. There’s really nothing that I know of that’s 1 or 0. We’re talking about the whole everything in between.

01:19:58

How to navigate social media around HA recovery

Chris Sandel: Kind of connected to this conversation around trusting sources and understanding research and all of that, where do you land in terms of the social media piece? As you said, there’s a lot more recovery coaches that are around now than 5 or 10 years ago – 10 years ago, it probably wasn’t even a thing back then, when we’re talking about HA recovery coaches. There is so much more stuff on Instagram and TikTok. How would you be suggesting people navigate this?

Nicola Sykes: I think the same thing: asking people for their sources. I’ve seen people say, for example, you should eat 70% carbs. I’m like, where does that come from? What is your scientific basis for that? There is none, as far as I’m aware. I’m happy to be proven wrong; if somebody listening has a source that tells me that 70% carbs is the right thing for period recovery, eating disorder recovery, whatever, please share it with me. But I don’t think it is.

Things like that, where people – maybe that one person ate 70% carbs for their recovery, so now they’re like “This is what everyone should do.” Eh, I don’t – so stuff like that. Any kind of proclamation.

Even the calorie recommendations that I give in the book, I have a table for daily energy requirements. There’s some variation depending on how tall you are. It makes sense because somebody who’s say 7 feet tall, as an edge case, is obviously going to have higher energy needs than somebody who’s 4 feet tall. But it’s actually a much smaller variation than one might think. There’s the number that’s out there, 2,500 calories a day; it’s a plus or minus. But obviously it’s easier on social media to say 2,500 calories than this, that, or the other thing. As we were discussing earlier, I don’t really think the number is that important. It’s really just to give people a guideline.

So I think any stringent recommendations like that, just ask, where is that coming from? What’s the basis? Does it make sense that you need 70% carbs and not 69% and not 71%? No. That kind of post is challenging. Again, I think the perfectionism that comes around that – if you’re told you have to have 70% carbs, then you feel like you need to be weighing and measuring and really checking, “Do I have 70% carbs?” I think those kinds of recommendations can drive perfectionism, and they’re not helpful in getting people to step away from that perfectionism and step away from the idea that the individual meals are super important and all of that kind of stuff.

Chris Sandel: I guess it’s finding people on social media where, one, they’re giving you their sources, but two, there is more nuance that is there. Because it’s not that I’m against making a comment like “Having a high amount of carbohydrates could be very important for someone getting their period back for these types of reasons, because actually, we know carbohydrates are really important for the brain, and based on this bit of research, it would indicate this thing.” I’m not against any of that.

But as you say, it’s when you get into very specific, but also very confident of this to be true. And look, there are definitely things I talk about on social media which I am very confident on, and that I also want to let people know that I’m very confident on because I think it’s a really important thing. But I’m not going to do that for everything, and I’m not going to do that for something where I’m like “There is a lot of variation here.” It doesn’t actually matter.

01:23:50

The importance of nuance in recovery

Nicola Sykes: Yeah. That actually pricked me – another thing that has been driving me a little batty recently is people who say “I’ll get your period back in 3 months.” That kind of certainty really upsets me, honestly. Where’s the evidence to support that? How many people have you helped get their period back in 3 months? For anybody that it takes longer than 3 months, it makes them feel broken. It makes them feel like, “What am I doing wrong?” and it gives you this further idea like “I’m not doing recovery right. What do I need to do more? My period’s not back in 3 months; what’s wrong with me?”

Again, it removes so much of the nuance from the recovery process. I mean, we are all different. Sure, some people can get their period back in 3 months. It happens. Some people can take 6 months, 9 months, a year. There are so many variables that play into that – where you started from, what exactly you’re doing for your recovery, how sensitive your hormonal system is, what else is going on in your life, what stressors you have. There’s just so many different factors. To just boil it down and say “Work with me and you’ll get your period back in 3 months”, I almost think it’s unethical. It’s not based in reality. It’s a marketing tool. I really dislike making false promises for marketing purposes.

Chris Sandel: Yeah. I get this question all the time in terms of “How long will this take?”, and I’m answering in the same way as you: there are lots of variables that are going to have an impact on this. How long this has been going on, how much of an impact this has made on your physiology – because something could be going on for a long time but there’s been just a small amount under what the body needed, and something’s been going on a long time and it’s been a long way under what the body needed.

It’s also impacted by, how much change is someone going to make? What are you going to do in terms of reducing or stopping your exercise? What are you going to do in terms of increasing the amount of energy that you have coming in? What are you going to do in terms of your propensity to challenge your fears?

So yeah, typically if I’m given that question, I’m giving someone a range, like “On the absolute low end of things, it would be this, and at the higher end it would be this. It just depends on variables that aren’t in your control and some variables that are.” I guess it’s the same as when people ask “How much weight will I gain as part of this process?” I’m always very blunt about “I don’t know. And I know that’s not the answer you want to hear, and I’d love to be able to give you a specific number, but if I did I would be lying to you. I don’t know.”

Nicola Sykes: Yeah. And also, I think a big part of this recovery process is getting away from putting importance on weight. It’s absolutely a question that people ask, but I really try and encourage people to not focus on that – focus on, “This is what I need to do to nourish my body, and I’m going to allow my body to get to where it wants to be, and that’s out of my control.”

Chris Sandel: Yeah, being more okay with uncertainty and not knowing. You can not enjoy that and it can be a little uncomfortable, and that can still be there, and I’m still making the changes that I need to as part of recovery.

Nicola Sykes: I think that letting go of that control over those numbers is a big part of recovery. I think that speaks to what you were talking about earlier – some of the people who recover their period but still have some challenging behaviours, maybe. I think that letting go of control, letting go of focusing on your appearance as the be all, end all is a really big part of that journey.

Chris Sandel: Yeah. I think I’ve done a podcast on it before, but I’ve been thinking about this a lot because it’s come up in the last week a couple of times with clients. I think true freedom lies on the other end of pushing past what you thought was acceptable. I think it’s really hard when you get your period back when you’ve just done a little more than what you were doing before or when you took your exercise down just a little bit, because you’re still within those same parameters that you were always in. So then you’ve never really broken out of that. Even though I’ve had this change occur and it feels positive, I really haven’t broken away from the shackles of what was keeping me here to start with.

It’s really “Man, I never thought I was going to be able to eat this amount of food, but here we are” or “I never thought I would be able to go past that number on the scale, and here we are.” People think that’s the most terrifying thing, and that is actually the most liberating thing, because it’s now “I’m not trying to hold on to anything. Should I add a salad at lunch? I’ve blown past the relevance of that a long time ago, so I don’t even get caught in that kind of thinking because it now seems so a drop in the ocean compared to everything else.”

I think that is where you then truly do get to that place, because then you’re not in the “Oh gosh, could I have two days off exercise a week? How could I do that?” as opposed to “Yeah, I just took three months off. I’m good. I can do two days off a week.” It feels like that’s the scariest thing ever, but that’s the thing that actually really does allow you to get the freedom that you’re after.

Nicola Sykes: 100% agree.

Chris Sandel: What did we not hit today that you want to hit? I can see we’re coming up on time. What else have we not chatted about that you want to make sure we cover, if there is anything?

01:29:50

Nicola’s upcoming HA recovery live course

Nicola Sykes: I think the only thing is telling people that I am working on a live course for February of next year, working with me on HA recovery. I talked about doing this for quite a while, and it got back-burnered to doing the translations. It’s something that I think will hopefully benefit a lot of people. I think it’ll benefit me, just a different paradigm for doing things. I’m excited to see how it goes.

It’ll be a live course for the first time, and then I might do recordings and do a less interactive course going forward. But we’ll see how it goes. I think my end goal is to do a course for providers and possibly physicians.

The other thing I’m working on is I am partnering with Dr Chrisandra Shufelt at Mayo to work on the REVEAL study and do some of the data analysis, because once we publish, then I can go to conferences and talk to researchers and physicians and help spread the word about HA in that arena. So that’s where I’m heading.

Working with individual clients now, and in perpetuity, I think, because it’s something I really get a lot of personal satisfaction out of – helping people recover their periods and have babies and recover their freedom around food and exercise. I get a lot of joy out of that. But I also want to keep working on increasing awareness and spreading the good word about reducing focus on weight to physicians. That’s my longer term path. We’ll see how it goes, but I’m excited about the course to start with, and that’s a stepping stone in this direction.

Chris Sandel: For sure. What’s included as part of the course? Do you know? Do you have those things down?

Nicola Sykes: We’ll talk about diagnosis and understanding where your HA came from, both from a physical standpoint and from a mental standpoint. Talking about changes in food and exercise to help with recovery. Those will be in the first two weeks. I’m planning to do two classes a week for the first two weeks, because I feel like there’s so much I want to get to people to start with. And then we’ll do following on from that a little bit more slowly, so talking about body image and the mental side of things. I might have Florence come in and help me with that one. And then learning about tracking ovulation and the importance of that, longer term recovery, and maybe adding back exercise over time.

I’m planning a bonus session a few months out so that we can have a check-in and see how things are going for people and really come back and talk about issues that have come up and questions and all of that. I’ll also be doing weekly office hours so that people can connect with me on a more informal basis and talk about what’s going on.

I’m hoping to develop the course together in conjunction with the people who are taking it, because I feel like a lot of times it’s like “This is what you need to know”, and I want to hear from people who are actually enrolled, what is most helpful for you and what do you want to work on? How can I support you in your recovery?

Chris Sandel: Nice. That was what I did when I created my programme. I did a beta version, did everything live, looked at what were the questions that came up, what was the feedback, how it worked, and then sat down and recorded everything, because it’s a huge undertaking to do that, and you want to know that you’re on the right path.

And actually, by going through that beta group, there was a lot of it that I kept, but I actually came up with a framework that then felt like it made sense for how it sat together. So yeah, I think doing this sort of iterative process as things evolve through what you notice people are really liking or “That thing doesn’t seem quite as relevant as I thought it was going to be” – yeah, I think that’s awesome.

01:34:10

How working with clients has shifted Nicola’s perspective

One of the questions I was going to ask at the top was I know you’re now seeing people as clients, and that wasn’t something you were doing previously. So how has that shifted your focus or the way that you do things? What’s come about by you seeing clients that’s changed?

Nicola Sykes: Oh, so it’s been a long time since we talked, because I think I’ve been seeing clients probably since 2016-ish.

Chris Sandel: Oh, so maybe it had happened after the first one and we didn’t touch on it after the second, or we touched on it in a minor way after the second.

Nicola Sykes: Yeah. I think the biggest thing that I’ve learned from working directly with people is everybody’s different, and really digging in and seeing, what are your daily habits and how can we make small changes to those – and big changes sometimes, to support you in your recovery.

I think a lot more of the psychology side of things – again, not a trained therapist or anything like that, but really, the questions that people ask, I think I’m really nicely able to provide reassurance. I think that’s something that really comes through in person versus reading a book or reading blog posts or what have you. I think the personal reassurance side of things is probably what’s most helpful to people in working with me directly – being able to answer questions and know that you’re getting an answer that’s well thought out and backed by evidence. And I will tell you when I don’t have evidence for something. [laughs] I think that’s probably the biggest thing, just the personal interaction part of it. That’s what I enjoy as well, being able to support people in their journey.

Chris Sandel: Nice. For any new practitioners listening, there is nothing wrong with saying “I don’t know.” I think in the beginning, there’s always this feeling of “Oh, I don’t want to say that.” I think there’s actually a lot of power in being able to say “Hey, I don’t know that – and I don’t know that for xyz reason because we don’t know that”, or “Actually, let me look into it and I’ll come back to you” or whatever it is. But there’s absolutely nothing wrong with saying “I don’t know.”

Nicola Sykes: Yep. And I think really knowing what your own personal expertise is. I often get questions about thyroid, and I’m like, I can give you a little bit of information, but thyroid is not my specialty. I’m not the right person for you to be talking to with that. I think that’s important, too – knowing what you know and knowing where you’re not the right person.

I have a client who actually, it turns out, has probably premature primary ovarian sufficiency – basically premature menopause. She’s gone to a number of different practitioners who are saying, “Oh yes, take these supplements or do this diet or do this” and I’m like, it’s outside of their specialty. It’s like scope creep. I really don’t like that. Obviously, HA recovery is different from premature menopause. Can there be somebody who is under-fuelling and overexercising and experiences premature menopause? Absolutely, and it’s still worth working on those things. But saying “Do this and you’re going to get your period back”? Nuh-uh. We need to really be careful about over-diagnosing in order to have people work with us.

I think that’s another problem that I see online. Somebody will start in one arena and move and move and move until they’re trying to do everything. You can’t know everything about everything. So I think really sticking with a focus – which can move and change and grow, but not trying to be everything to everybody I think is important. I don’t do that. I will share with people when we’re in my area of expertise and when we’re stepping outside of it and when we’re well out of it. I’m like, “No, I can’t help you with that.”

Chris Sandel: Where can people go to find out more about you?

Nicola Sykes: My website is noperiodnowwhat.com. Links to most things are on there. Is anyone’s interested in the course, it’s noperiod.info/course. I will have the contraception book available probably on Amazon and the other places you can find my book, and also at noperiod.info/contraception. If people want to work with me, that’s noperiod.info/appointments. I have the noperiod.info domain, and I like that as an easy way for people to find my stuff.

Chris Sandel: I will put all of those links in the show notes. Thanks for coming on again. I can’t believe it’s been 6 years. It has flown by. I always love getting to chat with you. For anyone who is suffering with HA and where this is something you’re wanting information on, I highly recommend Nicola’s book. It’s an incredible resource.

Nicola Sykes: Thank you so much.

Chris Sandel: Thanks for coming on.

Nicola Sykes: Really nice talking with you again.

Chris Sandel: I’ll speak to you again soon.

Nicola Sykes: Sounds good.

Chris Sandel: So that was my conversation with Dr Nicola Sykes. It was lovely to be chatting with her again. Her book, No Period. Now What? – I highly recommend it. If you are struggling with HA and you’re wanting to understand that better or you’re wanting to know what are the different options with it, especially if you’re wanting to get pregnant, it covers everything connected to HA and HA recovery. So I highly recommend checking it out.

That is it for this week’s show. As I mentioned at the top, if you’re wanting to recover from an eating disorder and to reach a place of full recovery, I would love to help you to get to that place. You can send an email to info@seven-health.com and just put the word ‘coaching’ in the subject line, and I can send over details.

That is it for this week. I’ll be back with another show next week. Until then, take care, and I’ll see you soon!

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