EP.203/ You don’t have to manage endo perfectly
Trigger warning: Conversations about disordered eating behaviours.
I’ve been noticing something for a while now. It’s always been a problem in society overall, I think it’s an issue that takes different form depending on the generation and the situation, and I’ve been acutely away of it throughout my endo career, but today I really want to directly speak to it because I am seeing it so much lately.
Today I want to tell you that you don’t have to manage endo perfectly. In fact, I am urging you not to try to.
And this is what I mean.
In the past say two years, I’ve worked with a couple of hundred people, either one to one or in my course, and for the most part, many people do take a balanced approach, but in some, I’ve noticed this trend to be very black and white with endo management, very full throttle, very all or nothing.
And I get it. Having had an eating disorder for the best part of my adult life and all of my teenage years, I understand how easy it is to become obsessive about certain food choices. And as a perfectionist and overachiever, I also understand the desire to want to go all in, to want to try and make changes all at once, to try and do all the endo management things all at the same time.
But here’s the thing. It’s not sustainable. Trying to do everything all at once and to stick to restrictive behaviours doesn’t lead to long-term successful endo management, it leads to resentment, stress, and exhaustion, and perhaps, even disordered eating. You’ll probably end up giving up because you feel so miserable, maybe not knowing what’s working because you’re trying so much at once and perhaps getting stuck in a binge-restrict cycle with your eating.
So, if you’re not really sure if this applies to you or you’re just not very clear on what I’m talking about, I wanted to share some examples.
So, I do these Q&As and last year, someone asked me a question along the lines of “Will I ever be able to eat pizza or bad food ever again?” And I think for context, if I am remembering right, she had been on a really, really strict elimination diet for a year or perhaps longer. I may have that wrong but I’m pretty sure that was the case. So, she wasn’t eating soy, dairy, caffeine, any forms of sugar, gluten, processed foods, alcohol, etc.
And this was my answer: Of course, of course you can eat a pizza. I mean why are we on this earth if we can’t enjoy one of the greatest things about being human now and again?!
And secondly, let’s try to move away from the term ‘bad’ food. I don’t know how you want to label it, maybe if you can, don’t label foods at all, but I think we’re creatures of labelling so perhaps rename certain foods as ‘foods for the body’ and others as ‘foods for the soul’. I don’t know what will work for you, but maybe try something less loaded and less black and white because that’s when we’re going to start getting wracked with guilt if we eat something that’s “bad” and controlled by restriction.
But back to the pizza. I went onto tell this group that I eat pizza every other weekend, if not every weekend. These days it’s not usually every weekend because I find that pizza really shoots my blood sugar sky-high, so now I tend to eat pizza once or twice a month, maybe coupled with a walk or cycle afterwards to help balance my blood sugar. Now, do I eat a gluten base and dairy on top? No, not because those foods are “bad” but because they don’t agree with me personally. I have a strong chance of developing coeliac disease with a high gluten diet due to my genetics, so I am careful of when I eat gluten, that doesn’t mean it’s ruled out entirely, but I usually save it for a good sourdough bread. Now having said that, where we live there is not always great access to vegan and gluten free food, so occasionally I’ll go for a sourdough pizza base if the place doesn’t have a gluten free one and we’ve already sat down and ordered drinks, etc. and it’s kind of too late to leave. Or maybe I’ve seen the gluten free pizza and I’m just like “Yeah that is not worth eating” because some places really have some catching up to-do on the gluten free front, and so I’ll opt for a gluten base instead.
Now a few years back, when my endo belly was really out of control and I still had a lot of IBS issues with SIBO, etc., eating a gluten pizza, especially if it had dairy cheese on top, was in short, a disaster. I would get so sick, my stomach would be in intense knots, and I would be desperate to get home so I could stay near a toilet. So that experience, that anguish, just wasn’t worth it for me. Following a meal like that, I’d feel like I had had food poisoning. So back then, when I made all of those changes for my endo, I would have been a lot more cautious, and I wouldn’t have made the choice to eat a gluten-based pizza. If a restaurant didn’t have one, I’d have a salad or something, and yep, it would be disappointing, but I knew the alternative was worse.
These days, I’m noticing on the back of my SIBO treatment last year, there are some foods that I am starting to tolerate more, and so I can quite confidently eat some gluten out and not worry about it. Now, if I started eating gluten every day, like I had to do for the coeliac test, then we’d have a problem. When I did that, I was nauseas every single day, I woke up with a belly that looked like it was about to pop, my joints started hurting, my blood sugar went up, I lost my appetite, my whole body swelled up and I had a more painful period that month. I was surprised it wasn’t worse, if I’m honest, reflecting on how I used to be on gluten, but it’s safe to say I was absolutely sick of gluten by the time I finished prepping for that test.
But my point is, I don’t have coeliac disease, I don’t have an allergy to gluten, eating gluten will not put me in hospital immediately like it does for my brother and sister, so I can have a little here and there and be okay. But when I eat it regularly, my GI issues worsen, and my body gets inflamed, and my period gets worse.
Eating some sourdough once or twice a month (or even more if say I’m away or I don’t know, it just happens that way) is not going to suddenly cause my endo to grow.
Yes, we want to be mindful of the inflammatory foods we eat that can worsen our symptoms, because we know that endo is an inflammatory disease, and we know that high inflammation levels worsen pain and fuel the endo fire. But if the majority of the time, you know most of the time, 80% of the time - maybe a bit less at times, maybe more at others - but you know, most of the time, you’re eating your veggies, fruits, nuts, and seeds (if you tolerate them), organic lean proteins, lots of healthy fats, etc. If you’re doing that, you’re giving your body the best chance at lowering inflammation nutritionally.
Avocado on sourdough at brunch with your best friend once or twice a month is not going to cancel that out. Now, if you know, categorically know, that eating gluten will send your stomach into a frenzy of pain and cramping, and you’ll be stuck on the floor of the café’s toilet in agony with an endo belly flare, then of course, choose something else (and consider getting a coeliac disease test)! I’m obviously not saying go eat something that’ll give you an immediate endo flare. But if you’re just staying away from something 100% of the time because you’re scared it’s going to cancel all your good work out or you just think it’s all or nothing with endo management, then I’m here to give you permission to eat the damn toast, or pizza, or whatever it is.
Here's another example. In the summer, we tend to head down to Folkstone for a day trips as it’s not that far from us. When it’s a sunny day, the harbour, which has like loads of food stalls and a food market, it’s a bit like Box Park, it’s very cool. Anyway, it’s packed with people drinking and I don’t know what it is because I don’t really like alcohol and it’s never in my home, and I’ll probably drink say three times a year, but it always makes me want a prosecco on the harbour, watching the blue sky over the sea. And so anyway, last year, I ordered a glass and Chris had a beer, and they actually gave me one of those tiny bottles which I think has about two small glasses in it. Anyway, I started drinking one glass and I drink very slowly, and I don’t know, maybe within 30-45 minutes, I hadn’t finished the glass, but I found I had pelvic pain, and it was really bad around my right ovary where I know I have a lot of adhesions. And I was just like “okay, this isn’t great for me right now.” And I stopped drinking it and gave it to Chris. Alcohol is inflammatory, it spikes blood sugar so that creates inflammation, but some alcohol is also very high histamine, which I know I react strongly to, and we know that histamine contributes to endo pain, and so it just inflamed me too much for me to carry on.
So that’s a clear example where I was getting signs from my body that I didn’t feel okay on that. And you know, I could have carried on drinking if I had wanted to, because I do know that my endo is in a place that I’m not going to have such a severe flare that I can’t walk or need to go to A&E, I haven’t had an experience like that in years. So, I could have made an informed and empowered decision, I could have thought “Okay, well I’m getting about a level 5 pain, and I can handle it, and I want to finish this drink because I’m really enjoying it, so I’m just going to accept there’s going to be some pain and I’ll go find a pharmacy afterwards for some pain relief.” But I don’t love alcohol, I tend to have a few sips and then I’m like “Yeah I’m done”, most of the time, so it didn’t ruin my day to stop drinking it, whereas to have forced myself to finish the bottle and then be in more pain would have. Now, had that been an ice cream or a hot donut, I probably would have carried on and just gone and got pain relief.
Now, I’m not saying push past the pain and eat what you want all the time any time because at least it’s an empowered and informed choice. I’m a health coach, of course my generalised advice is to eat a diet rich in foods that will provide you will the nutrients your body needs to live well with this disease. But on the flip side, I’m also not telling you to spend your entire summer staring at every single person eating an ice cream yet going without one.
So here are my tips for helping you to move away from this need for perfection if you’re struggling. Now, you don’t have to follow any of these, don’t use these tips as yet another stick to beat yourself with, this isn’t about doing this perfectly either! So just take some of these ideas if they sound good to you:
Number one is of course, if you’re concerned you have an eating issue, please consult with a trained mental health therapist. There is now a type of eating disorder called orthorexia, which I quote ‘refers to an unhealthy obsession with eating “pure” food’. It isn’t yet officially recognised but it is becoming widely known amongst mental health professionals working with people who have eating disorders, and I’ve linked to a website on more information. To be clear, orthorexia is not when someone just really likes to eat healthy, but rather when it becomes obsessive and damaging and is accompanied by extreme anxiety, guilt, and a need to be in control.
Number two is to track your cycle and work out when your body is better able to tolerate those “foods for you soul”. For example, there is no way in hell I’m going to drink a caffeinated tea on my period and a slice of sugary cake, that will put in in severe pain because my cramps respond very, very quickly to anything that raises blood sugar and inflammation in my body on my period. But when I’m ovulating, like the other day, I can find myself in a lovely tearoom at a manor house and decide to have some tea and cake and know that I’m probably going to be okay with that, providing I don’t do it every day in during my more resilient phases!
Number three is to eat enough and to eat enough variation so that you’re full, satisfied, nourished, and not feeling deprived. I’m not quite sure why this occurs, but something I’ve noticed in students or clients who come to me and are very, very strict about their eating, is that they’ve narrowed down even the anti-inflammatory foods, and they’re usually cycling on the same 5 veggies, and 2 pieces of fruit, if any at all – some cut out fruit entirely. And they tend to have the same meals week in and week out, and as a result, they’re miserable. Often when I ask why they’re not eating certain veggies, they’re not usually sure, but it’s just happened over time as they’ve become more and more laser focused, or they heard someone briefly mentioned something at a support group and they can’t remember what it was but now they don’t eat kale, for example. So, I tend to see a lot of unnecessary restriction and a lot of feelings of deprivation which can result in a binge cycle, or if they don’t end up binging, they just feel miserable all the time. Alongside that, because they may be so restrictive with their foods, they may not be eating enough to balance their blood sugar levels, and so are having swings of levels going super high and super low, which just makes endo symptoms worse and leaves them feeling hungry and depleted.
And I should mention here that these restrictions aren’t just around fruits and veggies. I often see people not eating enough healthy fats and healthy proteins, which are literally the building blocks of healthy hormones and are so important to managing endo.
So, if you’re eating the same foods and same meals, play around with maybe one new food a week, then two, then three and so on, or maybe try one new recipe a week. Do it at a pace that feels good for you and again, as I mentioned earlier, you might need to do this with the support of a mental health practitioner.
Number four is get to know how much of a favourite “food for the soul” you’re able to eat without symptoms, so for example, I know I can eat some sourdough a few times a month and be okay. Now, in functional medicine, the way we would do this is with a very short-term, elimination diet, where we remove the key inflammatory and allergy food groups for a period of somewhere between 10 days to 4 weeks. In my training it’s 4 weeks, to allow all the symptoms to entirely subside, and then, we introduce each food one by one, and sometimes someone can eat them fine, sometimes they react straight away, and sometimes it’s about how much they eat.
If you know you’re already triggered by the eating restrictions you’ve been experiencing around endo, I don’t recommend you do this right now and when you do it, I don’t recommend you do it alone either, I strongly suggest you do it with a trained practitioner. If you feel capable of doing it on your own, don’t just make it up, follow one written by a practitioner, and I recommend Dr. Jessica Drummond’s protocol from her book Outsmart Endo, which is what my training is based on, and get your doctor’s go ahead before you start.
If you’re not ready for that, just experiment as you are. So, try a bit of I don’t know, let’s say it’s cheese you want to try, for example. Try one specific kind of organic, grass-fed cheese. Try a small serving and see how you feel, then the next time you have it, try a bigger serving, and then maybe try two days in a row, for example and then observe your period that month if you eat the cheese near your period, etc.
And the quality does matter with an example likes this because if we’re eating animal products from sources that are unethical and non-organic, unfortunately they will be higher in hormones, chemicals, antibiotics and inflammatory naturally occurring chemicals which can all affect symptoms. Again, you know, a one-off processed food is not going to send you spiralling backwards, but I just mean overall, overall we’re trying to aim for quality foods. You can still enjoy your junk food, but we’re not really testing that because it’s not that we’re checking whether you have a sensitivity to junk food, say like a McDonald’s, and we want to see how much and how often you can eat that before you get symptoms, that’s probably a bad idea! We already have the information that for the entire population, endo or not, processed, and fast foods can contribute to the development of diseases and unhealth with excessive consumption, so it’s just about limiting them, not stopping them entirely (unless of course you just don’t like that kind of food!). And just to hammer that point home, as you know, I eat an anti-inflammatory diet the majority of the time, but last week, I had an Honest Burger with Beyond Meat patty and some sort of vegan bacon plus fries. It was actually pretty gross to be honest, but that’s beside the point, my point is, I am a health coach and I still eat junk food sometimes because I’m human and I want to live my life! The majority of the time, I am an extremely healthy eater and am very happy about that choice because it helps me to live well with endo, but I also love a good burger.
Anyway, I digress, my point here is, test yourself on the foods you love and actually find out if you can tolerate them, because some of you put yourself on an elimination diet and then never tested these foods again, you just went cold turkey and stayed in that place. The point of an elimination diet is to calm everything down inflammation wise, test foods and then develop a healthy diet that is largely based on nutritious foods that are tailored to your body’s needs and your tastes.
Okay, number five is don’t sweat the small stuff. So, if you know you don’t have an allergy and you don’t react strongly to something, unless say, you eat it every day, then don’t stress if it’s an ingredient in one meal. So, for example, if I eat a lot of soy products, so like a lot of organic tofu, tempeh, soy protein powder, tamari, etc. I tend to feel a bit more oestrogenic. So, we won’t get into this here because I cover it in my course and it’s a whole podcast in itself, but the research shows that soy products should actually help lower oestrogen dominance, but clinically, myself and my colleagues see that it varies from person to person, and this is likely based on numerous things such as where their hormone levels are already at, whether they’re a little sensitive to soy or not, how much they eat, etc. etc. So anyway, if I eat a lot, like I’m eating a few portions a week, I tend to have more swollen and sore breasts, more PMS, heavier periods maybe some clots, etc. So, I limit my soy intake, I have some, but I don’t have loads. But when I was new to all this, I literally freaked out at soy even being the very last ingredient in a tiny bar of chocolate, or if a bit of tamari was used in a dish that I was eating when out. I avoided it at all costs, and it made life really difficult! You know I’d eat at a lot of vegan and veggie restaurants and chances are, even if I wasn’t eating a soy product, soy sauce or tamari was used somewhere in the recipe, so it made everything very stressful. Now, I eat a little soy and I don’t worry about whether it’s in a meal whilst I’m out, and I’m fine. I’m still seven years post-surgery, I haven’t needed another one, and my cycles are still in a good place (providing I take care of them!).
My sixth tip is to decide what thriving means for you. I once said to a client, she had gotten her period to a really good place and I was super excited and I was like “I think we could get it even better.” and she was like “You know what, I don’t need it to be. I’ve got my life back, I can work, I don’t mind if I have a little pain that I can get by with one or two paracetamols.” She didn’t want to have to make more changes to her life in order to improve her period further. She had gotten to a place where her period was so different from what it was before, where she could function, and that was her version of thriving, and she didn’t want to make any more changes, try any new strategies, or new supplements, etc. to go any further. She was content with the incredible improvements she’d already made, and I really, really loved and respected her for that decision. She knew what she wanted, and she knew what she was able to take on, and she knew if she made any more adjustments, there was the risk of becoming overwhelmed for her, and of changing her life more than she wanted to and it wasn’t worth it to her. So, my point here is, don’t chase a health goal for perfection’s sake. Thriving has to mean that you’re doing well in both your life and your health, not that you’re doing well in your health at the expense of your life.
Alright, we’re on the second to last tip. So, my seventh tip is, find foods that replace some of the less endo-friendly ones you used to love, so that you can fill that gap and vary between them. For example, I love baking, I love cakes, but I cannot make sugar filled cakes every weekend and stay okay with endo, for me, sugar is kryptonite. Instead, I make healthy cakes that are super blood sugar balancing using monk fruit or allulose (which is a sugar free extract from certain fruits), and I also make my own dairy and sugar free ice creams too. I also love the Lindt 90% chocolate because it’s really low sugar, so if I can be bothered to bake or make ice cream, I snack on that instead and I enjoy it. Now, in fact, I prefer to eat these things over their typical normal versions, so I mean I prefer to eat my cake made with almond flour and monk fruit over eating a sugary cake from Waitrose or a local bakery. I like to know my blood sugar isn’t spiking, I feel better physically and mentally I enjoy eating foods that I know are good for me, so I don’t actually have to pick between them, it’s not like each week I’m wondering if this is the week when I eat the sugary cakes. But for you, I know for others, they prefer to just maybe go without cake and then having it every now and then, rather than eating an alternative more frequently. And I totally get that, but I like to bake, I like to make desserts, and I love trying to make them healthy, so for me, it’s fun, it’s part of the experience, and there’s no way in hell I’m going to go through a weekend without a dessert, so I would rather have a healthy sugar free dessert than no dessert at all, but that’s just me, so if the alternatives don’t work for you, I get it.
Now, just a side note, some so-called healthy desserts are not healthy at all, so I’ve linked in the show notes to some resources on ingredients to avoid, as well as some places where you can get some great alternatives and some recipes.
Okay, last tip! My last tip is to enjoy your ‘worth it moments’. This term was coined (or at least I think it was coined by her) by nutritionist Amelia Freer in her interview on The Doctor’s Kitchen. Worth it moments are when you indulge in that thing you really want because it’s worth it in that experience, it’s part of that experience. It might be champagne and cake at your best friend’s hen do. It might be your birthday cake on your birthday. It might be a sugary hot chocolate at a café on a rainy day with your partner or kids. I can’t tell you what your worth it moments are, you’ll know. For me, it’s things like going on a picnic and coming across a food market where they’re selling freshly baked bread and deciding to buy a loaf. It’s eating at a rooftop restaurant looking over the Greek coastline when travelling. It’s my boyfriend’s pretzels, straight out of the oven.
Savour those worth it moments, decide, right here, to enjoy living in that moment, make an educated and informed decision (again, as long as you’re safe and you’re not going to end up in A&E) and then let go and give yourself permission to have your cake and eat it.
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Show notes
Glucose Goddess sweetener guide
Sweet Laurel Bakery recipes (I adapt to make sugar free, but they generally are better for blood sugar because of the almond flour anyway, if you’re in the USA, you can order her cakes)
My Endo Net recipes