We need to talk about the endo-diet.

There will inevitably come a time following your diagnosis with endometriosis when you stumble across ‘the endo-diet’ for the first time. This may be through your own research efforts, the result of your attendance at a support group, or like me you may be randomly given a book on the subject by a well meaning friend. I classify it as one of those entities in life that once known can never be unknown-for better or for worse. But this topic is interesting food for thought (excuse my pun-I think I’m funny) and an excuse for some soul searching.

This was on my desk one morning. That actually happened.

This was on my desk one morning. That actually happened.

I’m not going to dwell on the ins and outs of the diets’ specifics here as I presume you are familiar with at least its basic premise. However, for you culinary newbies out there, it can best be described as the elimination of foods which foster inflammation and/or act as endocrine disruptors. This helpful image below shows which foods are recommended and restricted:

endo diet

I am a member of several Facebook groups dedicated to endo-recipe sharing and tip swapping, follow endo-diet pins on Pinterest, and keep a scrap book of suitable recipes which I make on a frequent basis. You could call me an enthusiast or a convert. I started eating kale, I bought a nutri-bullet to make smoothies, and I now use a variety of coconut based products. And I’m not the only one. There is no shortage of posts on social media or in the press from advocates of this eating style claiming that it solved their problems with chronic pain and/or infertility.

Now don’t get me wrong, I’m all for us endo-sisters taking positive and constructive action to regain some control over our health and to better manage our symptoms. In fact, I actively encourage it. However, some aspects of the endo-diet, or perhaps the movement that surrounds it, do not sit comfortably with me. Here’s why:

It’s super restrictive!

Have you seen what you can’t eat on this diet?! I mean seriously?! If you’re going to do it properly (and I’m one of those all-or-nothing types by nature) you can kiss goodbye to that Friday night pizza and beer, the big cheese-burger at your neighbour’s BBQ, your cups of tea at work with your colleagues, or even the yoghurt you have every day as your mid-morning snack. Do not talk to me of gluten/caffeine/dairy free alternatives- I lived with these things for months and have decided that most are pure unadulterated evil. I have vowed to never eat another co-yo. Basically, you have to quit all the little things that make life worth living.

coyo

I have put an end to this tyranny.

As much as I enjoy kale, avocados and quinoa, you can only eat them so much of them before you start loosing the will to live. Besides, I get super grouchy when I’m hungry (or ‘hangry’ as my friend calls it) and I have enough problems to be dealing with as it is without adding to them…just sayin’.

It sets you up to fail.

So this diet is tough, and therefore only the most dedicated or those most determined to completely purge their lives of joy are likely to be able to stick to it. This sets the rest of us up to feel like failures, or at least, I did. Several times I mentally berated myself for eating a cookie or a slice of bread, and that’s when I new that my pursuit of perfection in this diet had allowed me to blur the lines between self care and self abuse. That is not a healthy place to be.

It places responsibility for your pain on your lifestyle.

”In pain but you still eat gluten, or dairy, or caffeine? Well, you’re basically bringing the agony, fatigue, and infertility on yourself then lazy chops. It’s your lifestyle, it’s your choice.”

Nobody has ever explicitly said this to me, but I do sometimes sense it under the surface in my own interactions and in some of the stuff I’ve seen online. Like when people say: ”Is that brownie gluten free?” when they see I’ve order a desert. Or this woman banging on about how she went organic and just ate vegetables and then got pregnant after a decade of infertility. There is a sense of one-upmanship and competition to it that is really distasteful somehow. But I didn’t ask to have endometriosis, or adenomyosis, or chronic fatigue, so I will not be held to ransom by them.

It is not a cure.

I’m a scientist by trade so skepticism is but second nature to me of course. I just think that the benefits perceived from this diet probably just stem from people generally eating more mindfully and healthily, rather than due to the elimination of specific food types. And that’s a good thing- making healthy choices can only help our bodies and minds to cope with the onslaught that endometriosis throws at them.

But to me, that’s all the endo-diet is- a healthier choice, along with yoga, and acupuncture, and all the other things I have so desperately tried in order to claw back some control over my life and end the relentless pain I was experiencing. And do you know what? They have helped, my pain is significantly reduced from this time last year.

What these things aren’t though is a cure, and that’s what we all so desperately want and need. I will focus my energy on campaigning for that any way that I can. (Not that it claims to be a cure of course, but a symptom modifier, but I think it is paraded around in that way in some unsavory corners of publishing and social media. Not cool dudes.)

So now, I think I am living in a happier middle ground, or at least I try to, and that suits me much better. I am conscious of what I am putting into and onto my body, and have revamped my kitchen skills and culinary repertoire to boot. My husband loves all the new foods I’ve been making too which is great. I still attend my boot camp sessions too which help me a great deal.

But do you know what? If I want an ice-cream I’m going to have one, and you can bet it isn’t make with soaked cashews or coconut milk! 🙂

I’d love to hear all of your experiences and thoughts on the endo-diet! I totally accept that people have both posotive and negative experiences in this area. Has giving up gluten saved your life or driven you crazy? Do you have a favorite recipe? Do you follow the diet strictly or just reduce rather than eliminate certain food groups?

Love,
Claire
xxx

10 thoughts on “We need to talk about the endo-diet.

  1. At last someone has pointed out the ridiculousness of the endo diet! I have been gluten/wheat/caffeine free for 1.5 years which really helped for a while…. Then I stopped drinking my beloved wine and swopped it for G&T which did help for a while…. Now I am
    alcohol free… Still having the pains…stopped dairy and switched to rice milk, goats cheese and non dairy products which makes no difference whatsoever! I do not want to be a vegan or cut out anything else as I love food and I enjoy going out for meals. It makes me want to bang my head on all four walls of my home! I didn’t choose to have endo and as I have to live with it for a while I am not going to start eating raw veg and fruit as I will be even more miserable than I am already!

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    • Hi Ann,
      Totally glad you agree with me! Hadn’t seen much written about this so I thought I’d get it out there. I’m impressed by your efforts with it though. I think you’re right that we didn’t choose to have endo so we shouldn’t add more pain and restriction on top. Hope you are OK and your pain is manageable. Do keep in touch.
      Claire
      xx

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  2. I was diagnosed 2 years ago (almost to the day – it was my endoversary the other day!) and have been on the endo diet to varying extremes ever since. At first I went the whole-hog and eliminated absolutely everything. It really does help me an immense amount – I am largely pain free. But it is ridiculously hard to stay on top of, especially if you want to maintain a social life outside of the miniscule list of restaurants that can cater to your diet. (shout out to Nandos, Chiquitos and one of my local restaurants!)

    My biggest downfall is chocolate, as I really don’t like dark chocolate and coke but I do also slip in other ways. My absolute no-gos are gluten (I can literally gain 2 dress sizes of bloating in 5 minutes if I eat so much as a slice of bread), soy(a) and red meat as they cause me the most problems. It’s definitely not a cure, but it also has such an effect on my symptoms day-to-day that each time I ‘slip’ I know I’m consciously choosing to roll the dice on tomorrow’s pain levels.

    The hardest thing is other people judging when you slip. Because friends have seen me do it in the past when it came to going on a hen weekend they were really angry that I wouldn’t drop the diet while we were away. They didn’t get that slipping when you’re at home the next day to curl up and die isn’t the same as slipping when you’re supposed to be doing all kinds of crazy activities. So now I keep my slips private – that way only I can judge me. :p

    So glad I’ve found another endo blogger! When I searched around initially all I could find were old out-of-action blogs!

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    • Hi Ami,
      Thanks for your message, I am so interested to hear about your experiences with the endo-diet. I am glad that it has helped you manage your pain- that totally makes it worth it. I laughed about your Nando’s comment and I totally agree. When I first came across the endo-diet I told my husband I’d only try it if I was still able to eat there- it’s so good!
      I’m glad you’ve found my blog- please do keep in touch. I will check yours out too. Have you stumbled across any others that are good? My favorite ones are Endo Hope and Bloomin’ Uterus.
      Love,
      Claire

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  3. Pingback: 30 things about my invisible illness(es): Endometriosis and Adenomyosis. | The Endo The World?

  4. I tried to ease into this diet and realized it’s ridiculous. I already don’t consume milk, my dairy consumption is minimal. I don’t drink sodas so my occasional carbonated drinks are ginger ale when I’m feeling ill or one glass of champagne when I’m celebrating. I don’t fry food at home so that’s just an occasional splurge when out with friends and we order something fried to share. I don’t have refined sugars freely with every meal and there is always a conscious effort to avoid refined sugars when possible anyway. I lived with a roommate who was GF for 7 years and living with her did help me cut out a lot of gluten, yet I never managed to be 100% GF. I also cut down my red meat intake for a whole year to 1x a week, but guess what I’m extremely anemic due to my endo/adeno so my doctor told me to eat more red meat and protein/eggs for breakfast… well, that just flies in the face of the suggested endo diet so what’s a girl to do? Regardless of my “clean”-er eating I still get bloated and I still have gained weight and can’t seem to lose any of it. It’s so frustrating!

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    • Hi Lori,
      Thanks for your comment, really interested to hear about your experiences- they sound much like mine, particularly with regards to bloating and gaining weight despite the clean eating. It’s is frustrating. I just try to focus on the health aspect of eating well, that I am nourishing my body, and that often cheers me up and spurs me on. As I also said though, I have the odd cake or glass of wine too as that nourishes my soul which is just as important to be frank. Nothing will ever come between me and pizza! 🙂
      Do take care and keep in touch.
      Claire
      xx

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      • Yes for 2 years I worked out diligently and ate clean and didn’t lose a single pound. My doctor told me that my body is stressed out due to the adeno and endo and I was stressing it out more with all the physical activity and messing with my cortisol levels which causes fat to accumulate in the abdominal region. I was instructed to relax, do yoga and go for long walks. For the last few months I’ve been working on slowing down and getting ready for my 2nd laproscopic procedure. I hope that after this procedure my body will allow itself to drop a few pounds. (I too enjoy pizza and cake on occasion because life isn’t worth living for broccoli and rice cakes!) : )

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      • Best of luck for your next laparoscopy, really hope it helps! Interesting what your doctor said about your body being stressed out, makes total sense. The walking and yoga sounds sensible, I try to do this too! Take care of yourself and keep me posted.
        Best wishes,
        Claire
        xx

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  5. Pingback: Mission: The healthiest sick girl. | The Endo The World?

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