Hi,I feel like I'm going to be posting in this group an awful lot as you are all so lovely and reassuring. I have another question as doing research online I see conflicting answers. I'm only recently in the process of being diagnosed and am searching for answers everywhere as I can no longer tolerate the everyday exhaustion, pain and everything else that comes along with endo. I'm currently taking birth control and pain meds for endo while waiting for scan results and possibly surgery and now I'm thinking is it time for a diet change? I eat vegan anyway so dairy isn't something I eat and i dont drink but I do eat gluten and sometimes high fat foods. Is it even worth eating a low fodmap diet with no gluten, high fat or high sugar for my symptoms or is it just a myth that it helps? Im also asking as i struggle with food so am just looking to see if it helps anyone before i venture into a new possibly restrictive way of eating. Any advise or any experiences in changing your diet to help symptoms would be so welcomed. Feeling a little lost and lonely on this journey🤍
Does diet actually help symptoms of endom... - Endometriosis UK
Does diet actually help symptoms of endometriosis?
Following - I'm in a very similar situation x
I'm sorry to hear that, sending love🤍
Not much help because I don’t actually know, but from what I’ve seen, cutting out gluten does help for a lot of people… I need to try it. I found the low fodmap diet too hard to stick with, maybe you could try for example cutting out gluten for a while then if it doest’nt help cutting out a different type of food etc? Rather than going all out on the low fodmap diet. It’s hard though!
My symptoms seriously improved with a vegan diet. It's anti inflammatory so I think that's why it helped me. I started with NutritionFacts.org as a helpful, evidence based site, when I made the transition. Hope this helps.
Hi!
I'm seeing a lot about eating anti inflammatory in the comments, thank you for sharing what helped you. I'm definitely going to do the same x
I was finding my pain was becoming more and more throughout the month, not just cyclical. It was at a lower level that the intense and extreme pain before and during my period but it was still very much there, lots of lower back pain, bloating, and on-off pelvic pain. I then moved to cutting out gluten around 2 months' ago and so far very positive. I still have the same cyclical pain currently, it hasn't eased anything but it has taken away the 'through the month' pain. I haven't found it as difficult as I thought giving it up. I really missed pasta originally but I adjusted fairly quickly (not found a great GF alternative yet). For breakfast I'll have GF porridge oats with fruit or jam or I have a good quality GF bread for toast with eggs etc but avoid having sandwiches with it so lunches are more homemade soups, salads, leftovers etc. I cook almost everything from scratch anyway so once I'd got a few GF ingredients for key things (including soy sauce etc) then it becomes pretty second nature and not really an issue. It keeps me away from ultra processed snacks and it has improved my diet as well. Definitely worth a go x
Hi Scouty Bob,
Thank you for sharing what has worked for you! I am on the same wavelength of cutting out gluten as many comments have had a similar great outcome from doing so! I think once I get some staples as you say it will become second nature to eat this way! Hoping for good results! Thank you again x
Decent GF pasta - Tesco are now selling by a brand called Rummo. It’s expensive but they have it on club card price at the moment so I’ve stocked up …
Thank you! I'll take a look x
I was struggling for a long time and didn’t realise until I saw a gastroenterologist and dietician that I was eating totally the wrong foods for a bowel diseased with Endometriosis. I’m now on low fibre/ residue diet and it is one of only things that has helped reduce bloating quite significantly. It’s all the opposite foods to what I thought I should be eating but it’s well worth a try.
Best wishes to you x
I've tried it off and on over the years and honestly it just never had this amazing response for me to stick with it. It does help a little the bloating and gas which seems to make my pain worse, but as soon as I have more stress (work, life, etc) that really triggers my pain. I also found it really difficult to stick to the gluten free but where there are more options it might be easier.
Its interesting you say that, I believe it probably only helps if you have an intolerance to it as it would be causing inflammation in your body if you were to eat it. And we know inflammation seems to make endometriosis worse.. I guess we all have things that trigger inflammation in the body, for some people it’s gluten, others dairy, others it’s stress.. and figuring out the culprit and minimising it will most likely have a good impact.
good morning endometriosis is inflammation so you need to follow a low inflammatory diet.
Adding omega 3 is super important too.
It does help massively x
Hi,
I've seen omega 3 mentioned a lot in these comments it was something I was unaware that helped so thank you for sharing that information! X
It’s key to ensure your Omega 3 has the right balance of EPA and DHA ( forms like of fatty acid ) and that’s virtually impossible from a plant source ( a holy cow 😬 for many I understand, but there it is ). Plant essential fatty acids are predominantly 6 and 9’s and if out of suitable ratio with Omega 3 then inflammatory response and the likelihood of a leaky gut can follow. There is alot of research on the importance of Fatty Acid balance in managing both hormone health and inflammation. There is an apparent need to higher levels of Omega 3 with endo but whether it’s a physiological genetic higher requirement or a response to the body fighting the Endo inflammation isn’t clear.
The only thing that helps me is making sure I don't get constipated,so plenty of fibre, veg etc. I I get constipated I get more griping pain and pain up my tectum.
Hi, the specialist I saw said that he believes changing your diet has incredible results for endo patients. He said he's been very surprised by the change in his patients health when they adapt their diet. He mentioned no alcohol seems to work and I know this does with me. When I go gluten free, low sugar and no ultra processed foods, I feel much much better.
Hi sunset lady
Thank you for sharing! I will most definitely follow that advise aswell and change my diet x
Before you disappear down this rabbit hole can I suggest you read this book ? It may enable you to have an over view of the why’s and wherefores of endo and the effect it has on your physiology and gut. I’ve found it to be one of the most thorough and (as an acupuncturist and nutritionist myself) the research is solid. I found it confirmed a lot of what I suspected and it’s been the most useful in terms of managing pain, disease process as well as being human. You have to be prepared to tackle some of the “holy cows” held by different food groups but it’s for good reason.
Katie Edmonds “ Heal Endo”. She’s also written a companion 4 week food planner to help if you’re stuck or want inspo. She is an Endo sufferer and now a Functional Nutritionist. It’s a thoughtful way of finding out your specific triggers, a good anti inflammatory, wide ranging nutrition dense diet and a whole section on why high quality Omega 3 is key.
It enables you to create a liveable rather than restricted dietary life as too many times these diet suggestions aren’t a long term solution and can lead to eating disorders and malnutrition. Low FODMOP was only ever designed to be a means to diagnose the issues and certainly is not a diet for life.
Yes that book is brilliant 👏
Hi bloomingmarvellous,
Thank you so much for the recommendation I will most definitely check this out!
I'm understanding more about fodmap diet while looking through these comments Thank you for taking your time out to explain I've found it so useful as I did think of it as a long term solution. I'm so grateful for your advise and suggestions x
Sorry to hear that you're in pain, low fodmap is a really restrictive diet that's only meant to be followed for a short time before slowly reintroducing foods to see which ones are a trigger. Too often it's spoken of like it's a diet in itself when really, it's a tool for identifying what your triggers are. As with others above cutting out UPFs has been a big help, but can be difficulty on a vegan diet as so many of the non dairy alternatives include them.
Also remember that though you can help it a bit, ultimately this disease can't be controlled through diet alone. Be kind to yourself, despite our best efforts and trying to do what we can, this can sometimes go too far and I myself have ended up with disordered behaviours when it comes to eating as a result. It's a horrible disease, there's nothing wrong with looking after ourselves, but please remember that there's only so much that's in our control.
Hi,
Thank you for explaining fodmap in a bit more detail that's really helped me. I was thinking of it as a long term diet instead of a tool for finding food that doesn't agree with me.
Thank you for that advice it really one makes me feel less alone and two puts in perspective that I am putting too much pressure and blame on myself. I just want to fix this when ultimately like you say I have little control.
Thank you again x
Hi Lavenderpetal,
I have recently been diagnosed with endometriosis and I was advised to adapt my diet (cut gluten and high processed food, eat nutrient reach food etc.) and it helps control the pain. My doctor explained that when endometriosis is a bit advanced, nutrition alone may not be sufficient but it helps manage the symptoms. I was recommended this book « Endometriosis : a key to healing and fertility through nutrition ». I found it helpful :). Take care 
Hi Audrey,
Thank you so much for the book recommendation I will most definitely check that out! And thank you for sharing your experience I think that I will go down the route of cutting out gluten and high fat food.
Thank you again x
Hi,
I found out in May 2023 that I have severe endometriosis when I presented at urgent care/then A & E with symptoms of an appendicitis, which was promptly removed under laparoscopy the following morning. I also had an 8cm endometrioma and a 4cm one on the other ovary. Endo is also on my bowel, stomach & even seen on my liver.
I’d been battling with GPs for a diagnosis for at least 6 years following diet trials, misdiagnosed with IBS… tried the pill, even HRT. Online searches… private gynaecology appointments & scans, even a D & C following my private appt.
Post appendicitis - Decapeptyl & add back tibolone until hysterectomy. For me Decapeptyl has brutal side effects - joint pain, countless hot flushes, mood affected, Yet shuts down oestrogen and stops heavy bleeding - a Catch - 22! I’ve had 5 x monthly injections & decided it’s not for me.
So that’s the background & now to diet - In 2016/7 I tried gluten free on the advice of a previous GP with no basis for doing so as I’m not gluten intolerant. The Fodmap ‘diet’ was impossible. Friends with endo said same. Btw none of us are vegan either.
My way of managing - if ANY food causes pain, bloating, gassiness or seems indigestible and causes any symptoms (i.e a flare up more than once) I avoid it from then on. It takes time to identify & eliminate the offending foods.
For me that means - no potatoes (especially the skin of baked potato), certain lentils, some beans, and certain green veg that causes gas for most people (e.g cabbage) as it’s excruciating for me to digest due to severe bowel endometriosis. I avoided eating cauliflower for years, but reintroduced a small quantity recently and had a bowel flare up within hours as it digested.
I have also taken Buscopan and Mebeverine for bowel flares/symptoms as required.
Hope that’s helpful?! Hope you get some relief from symptoms soon.
Hi,
Firstly I'm so sorry you've battled for a diagnosis, I'm currently going through this it's awful.
Thank you for your knowledge and advise I really appreciate it! I think low fodmap isn't going to be good for me mentally low term but I will start noting what and what doesn't go down well with me.
Thanks again and hoping you are OK after everything you've been through x
Hi,
Firstly I'm so sorry you've battled for a diagnosis, I'm currently going through this it's awful.
Thank you for your knowledge and advise I really appreciate it! I think low fodmap isn't going to be good for me mentally long term but I will start noting what and what doesn't go down well with me.
Thanks again and hoping you are OK after everything you've been through x
Hi, another positive review for “Heal Endo” by Katie Edmunds. It’s really thorough, has helped me choose which supplements to buy to support my health, and how to best tweak my diet. The main thing is tons of anti inflammatory foods (varied veggies), quality protein and omega 3s, plus something that stuck out for me was the news that endo sufferers need 1.5 - 2x as much protein as none endo sufferers, plus tons more nutrients, as the chronic inflammation burns through nutrients.
Hi Amber,
Thank you for replying. I will definitely check this book out as I keep seeing it mentioned! I had no idea about the extra protein I will take that on board!
Thanks again x
I work as a dietetic assistant so naturally for me I've looked into this and tried things. I've been off cow's milk dairy for 23years anyway. Shortly before I got diagnosed finally with endo I had come off gluten as I was intolerant (though not actually coeliac as I had bowel biopsies done). Did stopping gluten get rid of the pain? No. However I got bowel control back and it helped my nausea which I'd had every day for 18mths at that point. The fodmap diet as has been mentioned is designed as a short term elimination and reintroduction of foods to find out your triggers. Focusing on anti inflammatory foods can help but then as a vegan I guess you won't be eating oily fish. You could look at vegan omega 3 supplements based on algea. It's also worth looking into foods that help the body absorb and get rid of estrogen (there's a word for it but brain fog is bad today). That's often veg like spinach. The frozen stuff is easy to slip into things. It's about balance. Try to reduce high fat and sugar as you can but going for total elimination will probably make life horrible for you. I find wine terrible for my pain levels but do ok with an occasional whiskey or g&t. Try and keep a food diary to see if you can spot foods connected with flares. Focus on good nutrition and supporting your immune system as that usually suffers with endo (for me a multivitamin with selenium helped lots I use one for women from a company called Nature's Best which is UK made, they have increased B12 in it to work well for vegan diets).During flare ups some find it easier to eat little and often, not big meals.
It won't happen overnight but with gradual dietary adjustment I do believe your body can cope better with endo and you can reduce some of the impact of it so yes it's worth doing.
Hi,
Thank you so much for replying. I've found your comment so helpful. You have no idea how thankful I am you've shared that knowledge with me. I wouldn't have even thought there was food that could absorb estrogen! I think gluten is something I will cut out as I suffer with such bad nausea daily.
Thank you again x
You are very welcome. Shared info from other suffers is usually the most useful out there X
hun I was told by the pain clinic dr to follow fodmap and also told by endometriosis specialist nurse to have a meditarianion type diet with lots of fish and vegetables . I think to follow these type of diets as a guideline as a lot of foods especially gluten are high inflammatory foods which help the endo to grow thus increasing pain. As you are vegan I would recommend that you speak to your own endo specialist as they are all different and will advise different things. I would do this or even your doctor as by taking things out of a vegan diet your just left with soya products or almond milk and vegetables and sometime a if you take the gluten out you may lack in other things or do you like pulses and the sunflower seeds or peanuts something with protein like a staple that is why I suggest speaking to someone as I don’t want you to get unwell by taking your main stable out. Or bread pizza that kind of thing. If your anything like my aunt she is a vegan with endo as well and she is very petit so just be careful and like I said seek advice from them. Xxx sending hugs 🫂
Hi,
Thank you so much for the advise! I definitely need to speak to a specialist but the waiting times are so long so hopefully I can save up and go private next year. Thank you again xx
I also found making diet changes made a big difference to my endo symptoms. For me taking out wheat and sugar really helped along with adding in more anti-inflammatory foods. Often it is a bit of trial and error to see what works for you as we are all different.
Hi! In general, doctors say that no diet can help, regarding the system-based trait of this illness (means that a lot of organs are affected in that). Similarily, my experiences suggest that during period, I cannot even eat, neither soups or liquids, due to the severe pain I have. So whatever I want to keep in the diet, I must take a short pause in it, I can no longer eat solid phase meals for a week. I think the better is to find your own way, that U finf useful for yourself. There are no two similar women affected by endo, so can be difference in their diet and lifestyle too.
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