Endo diet - any good? Holistic/alternativ... - Endometriosis UK

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Endo diet - any good? Holistic/alternative therapies like acupuncture?

sal-lew profile image
29 Replies

Hi all,

I have been reading up on things to help endo since mt laparoscopy - anything to keep this away! I've found out about the endo diet. Has anyone tried this and found it made a difference? The info I've found basically says to avoid red meat, gluten, soya, caffeine, alcohol, full fat dairy like cheese (noooo) and other obvious unhealthy choices, like lots of processed food, high sugar drinks, ready meals, etc. I've never experienced an intolerence to gluten etc but willing to try.

Also, any luck with alternative therapies? I'm not sure what ones would be helpful. I was thinking reiki? Reflexology? I have read about acupuncture but am scared of needles. If I can get tattoos and piercings though, I'm sure I can hype myself up for it.

Looking forward to see if anyone has tried these things.

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sal-lew profile image
sal-lew
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29 Replies
Tillyfloss profile image
Tillyfloss

hi. Hope you have had a comfortable day. I've done the Endo diet and noticed a reduction in pain very quickly, when a cyst ruptured and I had a week in hospital it all got worse but after a week at home it had settled. It didn't mean I was pain free but it made the difference between being able to walk our daughter to school and barely being able to get down the stairs. I had a lap two weeks and im in minimal pain at the moment but im going to mostly stick to the Endo diet as it's become a family habit anyway.

I've not tried other alternatives other than yoga ( if you have cysts you have to be careful) but im sure others can help with how they work.

keep positive and hope you find things that work for you. 😊

sal-lew profile image
sal-lew in reply to Tillyfloss

Thanks for your reply. I hadn't even thought of yoga. Does this help of do you do this for reasons unrelated to endo? x

Hannah27 profile image
Hannah27

hello! I have gone dairy free (one thing at a time!) and cut down on caffiene and alcohol. I cant cut these out completely, probabbly sound like a caffiene fueled alcoholic! But small amounts etc.

Dairy free has helped, I've lost about an inch from my lower stomach and haven't changed anything else from my diet really. I eat rpetty healthily anyway but the dairy thing has helped. I might do wheat next but the thought of all these diet restrictions is scary...

There are lots of dairy alternatives out there now as well, maybe give it a try? I hope you find something that helps. If there is anything else you try please do share :) Best of luck! xxx

Hannah27 profile image
Hannah27 in reply to Hannah27

When I say I have lost an inch, I mean I am less swollen now. The pain is still there but has changed.

sal-lew profile image
sal-lew in reply to Hannah27

I guess the lack of bloating is good though. I think that id half my problem. I do carry a bit of excess weight but the majority of my looking 6 months pregnant is bloating.

sal-lew profile image
sal-lew in reply to Hannah27

The thought of cutting out dairy makes me want to cry lol! I don't drink much milk, but I love cheese, and an ice cream in the summer. I can get free from ice cream but have you found a good cheese substitute? Sound like a flipping cheeseaholic.

I don't drink coffee, only tea, but could have herbal tea instead. I don't drink a lot either, maybe once or twice a month very moderately. Would miss a cider at the pub on a sunny afternoon though....would the odd ones cause an issue do you think?

Hannah27 profile image
Hannah27 in reply to sal-lew

Dont think the odd one would hurt at all, I drink quite a bit in comparison!

Sainsburys do coconut cheeses that stink but melt really well. I miss Brie! Even though its more of an xmassy thing! Soya milk in tea or coffee doesnt taste any different really to me. I miss yogurt the most! But so far so good, my mid cycle pain isn't half as bad as normal since doing the switch and I was able to walk on my last period which is a vast improvement!

I call dairy free cheese "feese" as in fake-cheese... maybe become a feesaholic? Sainsburys have dairy free cheddar, mozzerella and other cheeses that are dairy free. Bloody expensive though!

Best of luck to you though, I know everyone says to give up EVERYTHING which is why i am trying one thing at a time. xxx

sal-lew profile image
sal-lew in reply to Hannah27

Yeah when I read what you are meant to give up I was like....so basically I'm allowed to eat ice hahaha. I will hunt down some feese!! Think I'll copy you and do one thing at a time.

Fingers crossed I don't have to scrap pasta as well, I don't know how I'll cope!

Hannah27 profile image
Hannah27 in reply to sal-lew

oh god... a life without pasta?! WHY?! I know there are lots of wheat and gluten free alternatives that have had all the joy and love zapped from them but won't hurt to try. I am living on a lot of hummus and oatcakes and fruit at the moment (rock and roll!)

Fingers crossed cutting something out helps, let me know how you get on :)

This week I am trying Almond milk as it was on offer and my housemate keeps stealing my soya milk - the swine! I'm dying for a bowl of cereal.

Ice cream in summer... oh how to dream! I just bought some coconut ice cream before I cut dairy out and am saving it for a comfort food dairy induced treat!! It may be tonight!

My work has been stressful this week, I am looking for other jobs, and my period pain (even though I am no where near due on) has been horrific... so I am guessing cutting down on stress (ha!) would help as well?

Sending you lots of feese joy and happy vibes xx

sal-lew profile image
sal-lew in reply to Hannah27

I don't know where abouts you are but there's a local company near me called Frovacado that make free from ice cream. Think its dairy, gluten, and fat free...maybe dven sugar! Meant to still be really nice. Maybe they deliver? Not sure xx

poppy75 profile image
poppy75 in reply to sal-lew

Have you tried the sainsburys gluten free pasta? I've actually ended up preferring it. Can't stand any of the wheat free bread I've tried except sainsburys rolls which I think are delicious but damn expensive. All the wheat free alternatives are extortionate or rank. As I've been unemployed for over a year due to Endo all this is out the window now except the pasta. I just can't afford them xx

sal-lew profile image
sal-lew in reply to poppy75

I haven't yet. I think i will give it a go though if it's not too bad. Not sure I can face the bread though....its meant to be rank and as you say very expensive!

sakura22 profile image
sakura22 in reply to sal-lew

I am vegan due to endo and miss cheese too. I also avoid soya products, so use coconut, almond, hemp or rice milk instead. There'should a fake cheese made from coconut called violife which is ok melted on jacket spuds or gluten free toast and you can get nutritional yeast flakes by Engevita to sprinkle on gluten free pasta as an alternative to parmesan. It's not as nice as real cheese (sigh) but it is a bit of variety in the rest of my diet which is basically veg, fruit, nuts seeds, decaf tea and green tea! It all does help the endother symptoms. I alook use lots of spices in my cooking to compensate for lack of cheese - fresh ginger, turmeric, cumin, chilli etc

sal-lew profile image
sal-lew in reply to sakura22

I will have a look at some of the alternatives you have mentioned, thank you :)

Cath77 profile image
Cath77

I've done the endo detox from the Henrietta Norton book a few times and try to stick to the principles of an endo diet as much as possible. I do find it helps - particularly cutting down on bread. I would also recommend yoga and reflexology x

sal-lew profile image
sal-lew in reply to Cath77

I have had a look at reflexology! Will have to give it a bash once I've got some more money. Will have a look at the book you have mentioned. Don't tend to eat too much bread other than toast in the mornings, so that should be ok.

jusgem profile image
jusgem in reply to Cath77

I just looked this book up it's so expensive!! =O

Cath77 profile image
Cath77 in reply to jusgem

I've just checked on Amazon and I was shocked. I certainly didn't pay that much for it. Guess it must have gone out of print recently. I've had it a while.

Tillyfloss profile image
Tillyfloss

hi. I started yoga after I was in a bad car accident at 17, so its more something that has just become part of my week!! If you have cysts you need to check its ok to do. I find the deep breathing has helped with breathing through pain and has been calming when I've been stressed with the roller coaster ride that endometriosis has taken us on since Sept.

reducing a food at a time is a good idea, I was really bad with my pain and was barley keeping anything down so for me I was really strict for 6 weeks and then reintroduced one thing at a time as it just helped at the time.

hope it helps your pain. Xx

Sprinkles86 profile image
Sprinkles86

I've recently started to make changes to my diet after I had my intolerances tested (message me if you want the site where I got it from). Sent off a few strands of hair and got my results emailed about a week later. They tell you anything which you are more than 85% intolerant to - mine had a fair few on including alcohol (noooooo!!!), wheat and cream. I've cut a lot of them out now and it's made a big difference to my pain and bloating!

I also have weekly reflexology as we are TTC, the lady I see is fantastic and directed me to a site called cytoplan. Once you have your intolerance results you can fill in a questionnaire from their site and send it back with your results and they will give you a free diet plan! Not got mine yet so can't say how good it is but worth a try.

Soy/soya products are one of the worst things for endo (apparently) as it causes inflammation. This includes soya milk so best off with almond milk as an alternative.

I've also started using castor oil packs (use cold pressed castor oil) three times a week and this seems to help to, that or it's just a nice treat to put my feet up for half an hour with a hot water bottle on my tummy 😂

Xxxx

sal-lew profile image
sal-lew in reply to Sprinkles86

I will message you for the site as it sounds really helpful. Didn't realise soy milk could cause problems- not sure which I hate more, that or almond milk lol! They both taste funny in a cup of tea to me. I'll have to get used to it though. Or maybe rice milk, I think that's a thing?! xx

Sprinkles86 profile image
Sprinkles86 in reply to sal-lew

Eurgh they are both horrid lol I just avoid milk altogether lately! Sure I've heard of rice milk too, never tried it though xxx

Hannah27 profile image
Hannah27 in reply to Sprinkles86

Ooh could you send me the site details please? I should cut down on alcohol... but... but... :(

Shadow750 profile image
Shadow750

I do Reflexology and Deep Tissue Massage on my partner. It really does help. The Massage especially.

sal-lew profile image
sal-lew in reply to Shadow750

Deep tissue massage is one thing that does help me already but my husband thinks I only ask him for relaxation purposes and not for help, so on the occasions he says he will do it, I'm lucky if it's for more than 5 minutes!! And sadly the lady I used to go to has stopped practising, not found anyone who's managed to replace her yet!

Shadow750 profile image
Shadow750

My wife and I have struggled with this a bit too, especially in the days before I understood what the problem was as I had real issues with the levels of intimacy. So I would also do a bit but not enough because I felt frustrated. We resolved it in quite a lighthearted mercenary way. It was a case of I'll do this for you if you do that for me. As the years have gone by, it's settled into a bit of a routine where I think she gets 1 reflexology and 2 DTMs in exchange. But more importantly for both of us, it didn't feel like we were asking for help - it was almost the other way round, you felt empowered because you could kind of demand that you gave them a massage. For instance I could say jokingly "Well, the kids are going to be at your mums next week so you need to get yourself on the massage bed now as I've got 3 massages to give you before Monday !" or my wife can say something much the same. The important point is be lighthearted about it and not stick totally to it. So if she's having a bad time I'll do several massages etc but then she'll grab me a couple of weeks later and say "right you, upstairs !"

sal-lew profile image
sal-lew in reply to Shadow750

Hopefully we can do the same thing! We are doing a massage for massage exchange at the mo although I'm not sure he will remind me if I forget I'm owed one!

JackieBo profile image
JackieBo

Just a gentle reminder that, unless you have been medically diagnosed with Celiacs Disease or a gluten intolerance, which is rare, there is no real scientific evidence to support giving up gluten. It's expensive and difficult and can lead to other vitamin and mineral deficiencies if you aren't careful with your diet.

I see a lot of folks on here talking about banning gluten, which makes me nervous for them. It's a whole lot of effort to go through for something that isn't backed by science. (One of my best friends is a nutritionalist and she goes absolutely bonkers when she hears people talk about cutting gluten from their diet because everything in the media says it's bad these days and not because their doctor advised them to.)

Just be cautious and, if you think you have a sensitivity to gluten, go to your doctor before you decide to cut it from your diet.

health.harvard.edu/blog/goi...

sal-lew profile image
sal-lew in reply to JackieBo

Thanks for this, I have been tested for gluten intolerance and came back ok. I got some gluten free pasta because I eat a lot of pasta and it leaves me bloated so thought that might be ok, but won't be going the whole hog with gluten right now if at all because I think completing stripping things out of your diet can be bad. I don't have a lot of bread but will buy normal bread and tortillas. I think dairy may make the biggest difference for me and am going to try this for now. Although I've really struggled to find alternatives in major supermarkets at the mo!

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