Endometriosis diet do you

[Afrohair]

I’ve been on the endo diet for 9 months now but when I first started I couldn’t cope without meat so converted to grass fed meat. I've lost so much weight from a 12 down to a 8 or 6 I don’t eat as much sugar but when I do I have dark chocolate organic products only but issue I’m having is I hate that I can’t socialise properly or eat with friends.and I now always feel lethargic. I eat grass fed butter no normal dairy or gluten any more but the diet is kind of depressing some days I just fancy a Chinese or fish and chips if someone has something I like I will have a few bites only how do other people cope on the diet also hate my figure now I I wanted to loose weight originally and was always a bit skinny when younger but people keep saying I’m too slim now but I can’t start eating all food I was eating again

Does any one on here not follow the diet how do you manage endo without ?

my mum asked a consultant other day and she just said there’s no point in it as theirs no evidence that it works.i can’t really say if it’s been great although I did conceive when I first started it and I was very strict

I think I am kind of strict but I have to buy a lot of fresh veg nearly every day my endo has still got worse though despite this .

[Thecraftyadder]

Hi Afrohair,

I can imagine how frustrating that is. I've read a number of different approaches to the 'diet' because there certainly isn't just one and different things help different people. Laura Briden who is a nutritionalist believes the most important things to avoid are cow's milk dairy, sometimes eggs and sometimes gluten. (She wrote an excellent book called the 'Period repair manual' it sights case studies and research to back up what she says) Now I work in dietetics so naturally I'm interested in this side of endo management but I'm not a registered health professional so remember that all comments from myself and others on here express personal opinions. No one should be telling you 'do this and your pain will go away' because they can't promise that. No dietary modification will 'cure' endo or halt it's progress. It's simply a way to try and manage your pain and symptoms. In my case I have a lots of bowel symptoms so for me I strictly avoid A1 caesin dairy (all cow's milk products) and gluten as I have no bowel control if I have them. The reaction is instant. Until I had my surgery I was in so much pain that I couldn't tell if anything made it worse other than those. Afterwards I realized that sadly red wine and wine based things did spike my pain level so I avoid them now (fortunately the occasional g&t or whiskey is ok for me). I don't digest red meat well so stopped eating it. I attempted veganism but it left me tired and miserable. So I eat occasional white meat, fish and A2 caesin dairy (sheep, goat, buffalo milk products). It's taken me a year of experimenting to find my personal balance. Everyone's body is different so it's what works for you. I've also found this. The occasional sweet thing, sausage/bacon or gluten free fish&chips when I visit my parents doesn't kill me. I eat pizza once a week using a shop bought gluten free pizza base and my own sauce and buffalo mozzarella. It's my treat at the end of a week. I think unless you know something is definitely effecting you by altering your bowel habits, causing pain or increasing bloating then follow the 80/20 rule. If you eat well 80% of the time then allow yourself to have what you crave to join friends or family out on other occasions.

I watched some interesting YouTube videos by a lady called Jessica Valant who is a Pilates instructor + physio who has endometriosis. She talks about how after her diagnosis she followed a strict diet (she based it on a low GI diet) and exercise regime. She looked well on the outside and felt ok. She had a second surgery due to wanting to conceive again and was shocked that her endo was so advanced that she now had a frozen pelvis. She describes how she felt a failure but later realised it's not about what stage your endometriosis is, it's about how you feel. I found these videos very balanced and comforting to watch and I'd definitely recommend them as worth watching.

Eating plenty of fruit and vegetable, and keeping processed foods and sugar low is always good general to anyone regardless of whether they have endo. But this illness makes us miserable enough. There is no sense adding to that unnecessarily. Maybe reintroduce one or two things you are missing and see if you notice a reaction. Don't beat yourself up too much over it because you are already dealing with a lot. Wishing you all the best with getting your surgery soon

[Afrohair in reply to Thecraftyadder]

Thankyou this post helped me a lot and put it in a different perspective could I ask where you get your mozzarella from?ive been looking what type to get for ages as I loved cheese but normal cheese Dosent work for me any more and I don’t know which mozzarella to get?i cut out eggs I think I’m sensitive to them.i do have bacon and sausage but grass fed want to cut it down a bit though and eat more fish .i will look at those videos thankyou

[Thecraftyadder in reply to Afrohair]

Glad you found my essay above useful lol You should be able to get it most places like Tesco, Sainsbury's, m&s etc It might be labelled Mozzarella di Bufala Campana because it comes from Italy. I live in Ireland and it's produced here to so I can even buy it in Aldi but I've not seen the Irish stuff in England sadly. Just check the back that it just lists buffalo milk as the only milk ingredient. If you feel ok on that you should be ok with goat and ewes milk cheeses. (I can recommend a few if you do) but one step at a time though hey?!

[Afrohair in reply to Thecraftyadder]

Thankyou for that xx

[Purplewitch18 in reply to Thecraftyadder]

I totally agree with craftyadder, especially if its not helping you. Good advice there, i follow the same rule with the 80/20, though mine is more 90/10 id say. Getting rid of cows milk, processed foods and gluten are the ones that help the most. Gluten withdrawel lasted about a month for me and i felt awful, but fine after that. When you go out and socialise check out the menus first and look at what you can get away with or maybe a meal that can be adapted for you. For example sometimes when im out i can choose dairy free or gluten free but a lot of times the menus are seperate when we need this combined. So if i have gluten free pasta for example ill find the dish with the least amount of dairy and have it just that once. It can be difficult but you need to enjoy life aswel, just make sure it isnt often that you cheat. I too am ok with goats cheese and buffalo, and most big supermarkets sell them. I love cheese so couldnt go without these! X

[Afrohair in reply to Purplewitch18]

Thankyou I usually get gluten free crisps porridge and cereal .and avoid processed food I guess I’m still looking for the right balance without feeling terrible.stressing is not helping either was just fed up of feeling miserable with it all and I’m finding I batch cook a lot now and sometimes starving if I haven’t cooked the right food in time.

its difficult when I’m out because no one caters for me at my sewing group everyone brings gluten Filled snacks and if I’m invited for dinner I find there’s nothing on menu for me .I’m starting to think people think I’m weird lol.

I’ve been invited for a weekend away all inclusive but I just know I’m gonna struggle.

and I need to fatten up when I very much loved my food i didn’t realise how much bread I ate till I changed not keen on gluten free bread! But have it now and again .I only have olive oil or coconut oil if I need oil as heard sunflower oil or vegetable has gluten in.

[Purplewitch18 in reply to Afrohair]

I think thats a bit thoughtless inviting you to things but not catering for you, it doesnt take much to get some gluten free vegan stuff in just for one person. I find i eat lots of chicken and rice, pasta, i make veggie cottage pie and lasagne a lot, all dairy and gluten free using goats or sheeps cheese, i think maybe you could try stuff like this if you havent already and get your weight up a bit. I make curry in the slow cooker a lot aswel, so i eat the same as i did before but just swap ingredients for safe ones. Maybe you could take some pea or lentil snacks with you, and some gluten free cookies, just so you dont have to eat stuff youre not comfortable with. I still think though that if they are good friends they should try to put some food out you can actually eat. I get people dont understand or take it seriously because i have had that myself but good friends would always make an effort. I have vitalite butter/spread, its vegan and ive never had a flare up from it. I use it for baking aswel.

[Afrohair in reply to Purplewitch18]

Thankyou I did mention it on my meeting on Wednesday cause someone brought oranges I said oh I’m catered for today !and I think they then realised they hadent catered for me since I changed over almost 9 months ago !they had been giving me herbal tea but no snacks and I was bringing my own or going hungry if I didn’t have time.i tried goats milk I don’t like it but I will try the cheese see how I go I really miss cheese .your meals sound lovely I do have a lot more rice but if I have switched to organic brown because too much regular white basmati wasn’t working well I might have just ate too much that day but I’m going to trial it out.the main things I have are fish with vegetables usually 4 or 5 chicken and rice.or just vegetables but I tend to season them well xx

[Purplewitch18 in reply to Afrohair]

You are eating healthy but it does sound like you could do with some more carbs in your diet. I use quorn mince a lot as i dont eat meat, i eat some chicken but prefer the veggie options if they are dairy and gluten free. Im with you on goats milk, i hate it too, but the cheese is nice. You can get the hard goats cheese. Tesco and morrisons and sainsburies do st helens farm hard goats cheese, and you can use it as a substitute for chedder. I think youve done amazingly well with cutting stuff out! Better than most of us by the sound of it, but try and look for more substitutes rather than cutting out meals you used to enjoy, so that you can still make them just with a few tweeks. And when i make things like lasagne for example, i just make a big one and we all eat it as it tastes just as yummy as a normal one, so no need to make ll different meals, plus you can freeze stuff like that for days when you dont have time to cook. I think you should be proud of yourself because youve been extremely dedicated to this! Which suppliments do you take? There are ones that can help quite a lot. Xx

[Thecraftyadder in reply to Afrohair]

I agree with purplewitch18 as I've taken the same approach of adapting what I used to/want to eat. Initially everything I tried was different and I didn't enjoy it. Now I can eat curry, spag bol, pizza etc as I used to. Just having more variety in your diet can make eating a pleasure again! Remember potatoes are naturally gluten free as is quinoa (I used this to substitute for couscous). You can get brown rice pasta in Tesco and an alternative type of rice to try could be 'white and wild. Wild rice is highly nutritious' but it enables you to have some white with it.

I agree the bread situation is hard. It's basically only good as toast. I've tried all sorts and reckon Sainsbury's free from is one of the best out there. Nairns gluten free oatcakes/ crackers come in little pre sealed packets and are great for taking with you if you're worried you'll get hungry. I went to a party last weekend where I only had water and a macaroon I'd made myself all evening as noone catered for me! I wasn't in the best of moods when I got home I can tell you!!!

[Afrohair in reply to Thecraftyadder]

I’ll try see if I can adapt a bit more thankyou x

[Purplewitch18 in reply to Thecraftyadder]

Oh dear, think we’ve all been there!x

[Purplewitch18]

Also a shot of organic apple cider vinegar with warm water every day, and essencial oils on your tummy like clary sage, geranium, frankensense, cypress and peppermint are good pain releivers. I found this out a couple of months ago when i started getting awful pain again, turns out it was an ovarian cyst. Well i was so poorly, went to hospital twice and gps, they were useless. Started on the vinegar and the oils and started to get releif, had a scan on monday and the cyst has gone. I still have carried on with it because if its that good for a cyst i figure it can be good for endo too x

[Afrohair in reply to Purplewitch18]

I heard frankincense is good for endo but not tried it.the vitamins I have are serrapatese primrose oil cod liver oil zinc magnesium gosh I loose count I think I have about 10 tablets a day folic acid I want to try the co 10 ubiquinol aswell I think that’s what you call it.

I think I will try some of those meal ideas.so sorry about your cyst I had one but 2 but they went away naturally and I went to a and e twice they are useless they diagnosed me with pid at the time which I didn’t have.i use castor oil on my abdomen it usually is quite helpful x

[Purplewitch18]

I didnt know about the castor oil so thankyou. I take all of those suppliments too, though i stopped serrapaptase just because i kept eating by accident when i was suppose to be taking it! 🙈. I did find it really good though. I take ubiquinol, and turmeric. I also take flaxseed oil it works for me. My only battle is the fatigue, im still working on that one x

[Afrohair in reply to Purplewitch18]

I also put turmeric on everything I stopped for about a week when I ran out and my body did not like it .yes castor oil releases toxins and things use it on your tummy then add warm hot water bottle you are supposed to leave it on a while but I usually end up getting up lol I have trouble with tiredness I can’t quite combat it I think cause I already have children aswell it’s quite difficult to tackle and I hate sleeping through the day x

[Purplewitch18 in reply to Afrohair]

Ahh castor oil pack, i have done those before. Yes i have a daughter too, its not easy with little ones but on the other hand i think id sleep my days away when i could without her x

[Tillyfloss]

hi. Hope you're having a good day. For me diet does make a massive difference but it's such an individual disease I've got friends who have done the same and its been worse😞.. I was really strict for 5/6 months then after surgery I tried different foods to see what I was ok with, so for me I'm fine with milk but can't have pasta at all. Its very difficult to eat out but I can manage flare ups by food using paracetamol and buscopan. Are you on pain relief? Xx

[Afrohair in reply to Tillyfloss]

I’m actually good for pain relief I only take it when I really need to I think I’ve had endo for 3 1/2 years during that time I’ve ate anything didn’t no I have it as soon as I thought I had it I changed my diet so I’ve got nothing to compare wether the diet works for me also the doc put me on pill and my symptoms have got worse because of bleeding so I guess that’s why I wanted to know if anyone didn’t follow the diet I know I had a terrible diet and loved sweet food before .