Endo diet. Thinking of trying it, what a... - Endometriosis UK

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Endo diet. Thinking of trying it, what are your thoughts?

Sofaargh profile image
11 Replies

Stage 4 endo, I really should of started it a long time ago buy from what I understand it's no wheat and I love bread and carbs!

I've been on endo resolved and I just can't get my head around it. I'm so blown back and confused (the fact that I've had oramorph, diclofenac and dihydrocodeine floating about my head probably isn't helping ha)

Can someone really dumb it down for me, maybe link me to something a lot simpler to understand or really mega broken down?

Also what are your experiences..

Did it ease your symptoms much?

Would you recommend it?

Is it easy to stick to?

Any side effects?

Any help is MUCH appreciated

From a very sore, drugged up and confused lady xx

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Sofaargh profile image
Sofaargh
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psychosue profile image
psychosue

I tried the endo diet for a few months last year, it was hard to stick to but they a fell pregnant and was very sick so gave up, I had a miscarriage and I've felt great since I had erpc. I am doing slimming world now and still eat bread but not much, I eat lots for meat rice and veg, and more fruit than I every did. It's hard but I was I so much pain and the pain killer weren't work so I'd would try anything if I though it was going to help.

hayls profile image
hayls

Hi

I follow the endo diet and would fully recommend it. I previously did it for about 6 months when things were at their worst (stage 4 and everything stuck together!), I then got a bit slack with it when on prostap as that worked really well for my pain so didnt have the same incentive to stick with the endo diet at the same time, but now im off the prostap and have recently had extensive excision surgery etc ive gone back to the endo diet. Been about 2.5 months so far.

Some of my friends thought i was crazy as in their heads all i ate was pasta bread and pizza! But once you've been doing it for a couple of weeks its really not as complicated as it seems. To start off with I wrote out a 4 week meal planner and made it as varied as I could think of, after that I haven't had to think about it that much. Also, can always cut a few things out first and gradually build it up. And as for bread, most of the free from bread is absolutely fine, I don't tend to have it that regularly but its really not bad. My tip would be not to switch too much to free from alternatives, it will only make you feel like the diet is restrictive and they are expensive, I tend to only buy the free from pasta, there are plenty of "normal" foods out there to choose from that fit the diet.

On a really basic breakdown I cut out:

- Wheat (not gluten - there's quite a lot of foods that don't have wheat but do have gluten so more choice than going gluten free)

- Dairy

- Sugar - don't add to foods and avoid foods with added sugar. Pre made sauces, eg pasta sauces are typically the worst but easy to make your own instead.

- Meat - limit to chicken (organic preferably). I do also have very small amounts of minced beef. I also have wheat free sausages occasionally with no issues, most high meat percentage tend to be wheat free. I also eat free range eggs but recently they have been making me sick so cutting them out for a while!

- Caffeine - I'm using lent to get back to 100% caffeine free!

Overall I stick 100% to no wheat and no dairy and for me it makes such a difference x

Katrina13 profile image
Katrina13

I have endo + IBS, and am lucky to have an extremely good dietician and she seriously warned me OFF the endo diet. She told me that she constantly has to pick up the pieces when women have gone onto what is a major diet, without understanding the implications.

She told me not to cut out all dairy as you need the calcium. Instead only ever eat small portions of full fat, organic milk, yoghurt & cheese. Low fat cheese and yoghurt are full of sugar, additives and gels that replace the fat.

For meat, eat mostly chicken and occasional red meat, preferably organic but definitely free range. Nothing processed, only natural cuts of meat. I also eat a lot of oily fish.

Avoid sugar, caffeine and anything at all processed e.g. sausages, ham, bacon, ready meals, pork pies, pasties etc.

I also completely avoid all of the 'free from' pastas etc as they are made from processed rice flour, and white rice is not really good. I only eat brown rice and wholewheat pasta.

So today I only eat meat, fish and vegetables cooked from scratch. It really isn't more time consuming, it just takes a bit of planning. Basically I avoid what we call 'baddies' which is additives, processed food and anything that isn't food in its natural state.

I eat bread at weekends. I make my own though, with wholemeal + spelt flour. I always avoid white flour completely.

Works for me!!

KM1986 profile image
KM1986

I totally agree with the above. At first, I though the endo diet worked wonders, but it turned out that after a large cyst had burst, I felt better because it was gone, not that the diet was doing wonders. I basically followed the dairy/wheat/caffeine/sugar free diet and found very little (if any difference). I actually found that because I was eating more fruit etc, I was producing more wind which was aggravating my symptoms. I think eating sensibly, little and often is about is good as you will get xxx

KM1986 profile image
KM1986

I totally agree with the above. At first, I though the endo diet worked wonders, but it turned out that after a large cyst had burst, I felt better because it was gone, not that the diet was doing wonders. I basically followed the dairy/wheat/caffeine/sugar free diet and found very little (if any difference). I actually found that because I was eating more fruit etc, I was producing more wind which was aggravating my symptoms. I think eating sensibly, little and often is about is good as you will get xxx

KM1986 profile image
KM1986

I totally agree with the above. At first, I though the endo diet worked wonders, but it turned out that after a large cyst had burst, I felt better because it was gone, not that the diet was doing wonders. I basically followed the dairy/wheat/caffeine/sugar free diet and found very little (if any difference). I actually found that because I was eating more fruit etc, I was producing more wind which was aggravating my symptoms. I think eating sensibly, little and often is about is good as you will get xxx

KM1986 profile image
KM1986

I totally agree with the above. At first, I though the endo diet worked wonders, but it turned out that after a large cyst had burst, I felt better because it was gone, not that the diet was doing wonders. I basically followed the dairy/wheat/caffeine/sugar free diet and found very little (if any difference). I actually found that because I was eating more fruit etc, I was producing more wind which was aggravating my symptoms. I think eating sensibly, little and often is about is good as you will get xxx

KM1986 profile image
KM1986

I totally agree with the above. At first, I though the endo diet worked wonders, but it turned out that after a large cyst had burst, I felt better because it was gone, not that the diet was doing wonders. I basically followed the dairy/wheat/caffeine/sugar free diet and found very little (if any difference). I actually found that because I was eating more fruit etc, I was producing more wind which was aggravating my symptoms. I think eating sensibly, little and often is about is good as you will get xxx

Catness profile image
Catness

I follow the endo diet as I am stage 3/4 endo and have interstitial cystitis too and after my diagnositc lap where they tried to untether everything and get rid of as much endo as they possible could I have refused all further treatment. They obviously want to put me on a lot of tablets and hormonal stuff and a fake menopause and although I believe it is the right course for some people, it isn't for me.

I think personally the endo diet can be too restrictive to the point where you can just give up on it because it is so hard and so I do let myself have treats. It's common sense though to a point: you are what you eat and if you are filling yourself up with stodgy rubbish (white breads, pasta) and stuff full of sugar (anything processed) you aren't going to function at your best level. Essentially the aim of the endo diet is to reduce the intake of foods that can affect the estrogen synthesis in the body as too much of this is what causes our problems.

I am completely meat, caffeine, alcohol, dairy free

and I am mostly sugar and gluten/ wheat free

I eat a lot of raw fruit and veg and have a juicer at home too which really helps when I am taking a lot of opiate-derivatives for pain relief such as codeine which can really bind you up. I also drink a lot of water.

Since starting with this way of thinking towards food I do feel a lot better but there does need to be a bit of planning because you need to make sure you are getting the nutrients that your body needs to heal itself. I sit down and plan weekly what I am going to have and then see what I can add to my meals (beans and pulses and things like that) to make sure I am properly feeding myself. I don't think it's as simple as just going cold turkey on the bad stuff.

I'm 23 so it is difficult (I am the lemon at parties drinking water) however, with the right planning you can do it. Since I have done it my mental health has improved a lot too and I generally feel more energetic and alert.

Saying all that though... I'm currently on my period and having a particularly bad day of it today so you can bet your life that I am going to treat myself to a bit of chocolate this evening!

I think it should be about finding what's best for you and perhaps it doesn't need to be so extreme but I do think it is really worth making n effort to give your body the best chance it can have food wise to feel better :)

Very best of luck! xxx

Katrina13 profile image
Katrina13

I strongly recommend BOOJA BOOJA as a special treat - they keep me going on bad days. Dairy/wheat/sugar free chocolate whoop whoop!!! boojabooja.com/

lem00003 profile image
lem00003

Hi, I’ve been following the endo diet since my diagnosis in April.

I was dairy free prior to this because I had long-term issues with milk (cheeses not so much but drinking milk was a disaster).

I’ve seen a massive improvement to be honest. No bloating at all and no longer as swollen/ puffy as I was when eating a lot of processed foods.

Like many, I was brought up on cereal and toast for breakfast with potatoes and pastry at dinner time or some kind of pasta. I haven’t struggled with the bread because there are tons of gluten free breads and rolls nowadays. I tried GF in 2012/2013 and the bread was tasteless cardboard but it has come a long way since then!

I would also support creating a meal planner - helps you stick to the lifestyle change and will also cut down costs because it can be an expensive change to make.

I eat a lot of salads, fish especially salmon and chicken/turkey. A very small amount of red meat (steak) but generally stick to low fat options . Breakfast now is fruit (berries, oranges, mango etc), dairy free yoghurt and gluten free muesli or sometimes toast with scrambled or poached egg.

Another thing I would say is to maybe actually eat more on the diet. So instead of traditional breakfast, lunch and dinner you might want to add in two or three small snacks to that (you might feel hungrier at first)

I ditched coffee a long time ago and now drink green tea, water, coconut water, carrot, cranberry and beetroot juice. I occasionally have a hot chocolate from green and blacks and I like the Eat Natural cereal bars.

Best of luck!

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