Endemetriosis diet

[Zippy1603]

I've just been diagnosed with endemetriosis and had it removed. Where do I find information about diet etc to prevent it from growing back?

[Brambledoggy]

Hello. How did you have it “removed” exactly? Please may I ask? Nina.

[Zippy1603 in reply to Brambledoggy]

Laparoscopy and lazered off x

[Brambledoggy in reply to Zippy1603]

Not sure if you’ve read my profile. Or how old you are. Or where you had the surgery. Or by who. But when I hear that surgeons, gynaecologists, specialists, are going down this route, it makes me really cross and upset and frustrated. Endometrial cannot be lasered away, cannot be “burnt off”. Cannot be ablated. Think of your endo lesions as flowers or weeds that have roots, a dandelion maybe.....and what your surgeon has done has only burnt off the tip off the flower, not the whole root. So the root can still grow. You have trusted the surgeon, as you should be able to, but I’m afraid the only way to remove endometriosis lesions wherever it is located is to undertake deep excision surgery by an expert, with cold scissors and take the whole lot away. It’s incredibly specialist. It should only be undertaken by one who has a track record of performing this kind of surgery. I know all this, because I am you. Only I’ve had this disease from 17, and I’m now 48 and had laser surgeries and like you I did not know either....so can very much talk from experience. I’m in agony most months and on a waiting list to be treated properly at last. I’m going to DM you with some things you can do diet wise to help yourself and to lessen your symptoms. I’d really like if others with LOTS of experience and knowledge can chip in and offer some support. Please.

[Staples7 in reply to Brambledoggy]

One hundred percent agree, I had excision surgery a little over a year ago. After my surgery and even before it I cut out dairy and gluten doctors orders and went on a low inflammation diet. Ablation and laser my doctor would never do bc it will grow back at a rapid rate since your not getting it from the root. A surgeon who specializes in endometriosis and excision will always be the best route. I’m still currently pain free and had stage 4 endometriosis. Best of luck.

[Brambledoggy in reply to Staples7]

It’s nice to hear good news for a change. I’m delighted you’re no longer in any pain. Long may it continue. X

[angiecxx]

I'm afraid endometriosis will never go away sadly it's not curable 😕 yes it can be lazered away but it's not all removed and endo spread to other places i.e your organs, spine , bowels and bladder I had a full hysterectomy two years ago and I still have it in places mainly my bowels and bladder I was told having a hysterectomy would help and stop the pain but it's made it worse I think the best thing for you to do is to do some research and find out more information about endo I'm really sorry to be the bearer of bad news but I urge you to research into endometriosis and take it from there some women find cutting out dairy and meat can help reduce inflammation which is a flare up of endo well one of many types of flare ups i have lived with this debilitating condition for 27 year's i also think you should go back to see your specialist and say you have read up on endo and been told it's not curable best of luck my lovely and I'm sorry you were told it's gone away i hope you get some answers 💖💖💖

[KGDI]

Hello zippy1603, that’s great you’ve managed to remove it, I’m assuming you must have had laproscopical excision. I’ve had endometriosis for 25 years. I’ve been on a plant based gluten diary and wheat free diet for many years (a decade). A good diet will reduce the pain episodes and slow down the growth. But it will always grow back because endometriosis has no cure. Caffeine and red meat as well as stress attributes to rapid growth because it impacts the oestrogen levels in your body. Endometriosis has the tendency to invade multiple organs even outside of the peritoneum. As the endo tissue growth is dependent on oestrogen levels, controlling the hormonal aspects is important. Exercising and diet really helped me control the growth but ofcourse it eventually reached stage IV endometriosis. I’ve had multiple surgieries to remove the endo but the diet has helped immensely to delay surgery and also manage the frequency of pain episodes. Hope this helps.

[Mussya]

Hi,

Hope the answers here haven’t depressed you too much... The diet is anti-inflammatory, look that up. Basically, a lot no-now: no meat, no dairy, no refined sugar, no gluten/yeast, no caffeine, no alcohol. It’s also recommended not to consume non-natural preservatives or fried food. And not to use plastic containers/bottles. Lastly, daily exercise is recommended too - yoga is great for it.

I’ve been on it (excluding the plastic, too much of a fluff for me) for about 3 months now and it reduced pain levels considerably. I can’t say it’s easy, but worth it.

My sister has been on it for a couple of years now and she has no more pain at all. She also has acupuncture and Arvigo belly massage, on top of the conventional doctor check ups. She just had a massive endo cyst removed from her ovary, but opted to leave the endo lesions as she has no more pain and didn’t want the risk of adhesion.

Best of luck!

[ronnienic]

I have to admit the one thing I did see a massive improvement on was cutting gluten out of my diet. I also limit my intake of dairy, alcohol and caffeine. The gluten was a total game changer for me. Don’t get me wrong I still have flare ups and still get the pain but not nearly as bad as when I was regularly eating gluten. The thing to realise though is everyone is different. My nutritionist specialises in endo and he had me remove the different food groups then gradually reintroduce them (so I am ok eating meat, limited dairy drinking decaf once a day etc, I know some people are not). Also give it a bit of time so that things can get out of your system. Good luck x

[HarrietC]

I had never really considered the diet before, I am in no way able to control myself when it comes to food. I should probably be giving it a try, I'm 15years in and now on fertility treatment so my cysts are growing rapidly. Thank you ladies for sharing xx

[Brambledoggy in reply to HarrietC]

My endo has had such a massive negative effect on my life and I hate “it” so much that rather than “it” being in control of me, I’m going to try my damnedest to be in control of “it”....there’s no way I’m going to eat a ready meal that’s been sat in plastic for god knows how long with god knows how many chemicals festering away in it, and then eat it!!! I’m now a complete convert to super healthy eating....But maybe I’m a bit sad as I do get really excited when I see a beautiful white cauliflower....(I did say I was sad).....😊 you’ve got to think 15 years down the line too.....

[Mussya in reply to HarrietC]

I’m literally addicted to chocolate and thought I could never give that up (I like milk chocolate, lots of sugar and dairy). I love food, I love meat, luckily not so bothered about alcohol (not being British :)). Also wanted to go vegan for years for moral reasons but just couldn’t it. Then, when I was suspected with endo, I just made the decision and it works. I just manage not to eat the bad stuff. A huge help is that we don’t have my favourites at home anymore - my partner is amazing and have taken on the diet as he does most of the cooking. He has his stake/burger nights when I’m out or makes sure I’m ok with it. I guess it’s about making this decision, wish I could help with how that works!

Good luck x

[Danijordi88]

I have Endo remaining on my bladder and bowel and I have noticed for years that dairy tends to be my issues. I had my surgery about 15 weeks ago now and the bowel symptoms are staring to flare again but I am putting it down to not being careful with my diet.

Ironically, I am currently sat scrolling through this page as I am sat on the loo in moderate pain. I know that once I am empty the bloating will calm down aswell as the pain.

What I am trying to say is that I agree that diet does effect flare ups for me, but I have had years of misdiagnosis and being palmed off with IBS and all sorts to figure this out. What effects one woman will not necessarily effect another - it’s about finding what’s right for you. Maybe go online and download a food journal so you can try and see if you can notice a pattern. Good luck xxxx

[Hajnal]

Hey Zippy1603,

I hope your endo journey will be as painless as possible.

I had 3 surgeries in 4 years. After the first my endo grew back in 5months 5cm. And the pain became strong. With the third surgery they removed an 8cm cyst and scar tissues which covered basically my ovaries. I was on pill to control the pain before but not having it for 2 days all the pain was back. The last surgery was 2018 April. I went completely plant based couple of months before that. Now 1.5 year I'm pain free. I have never had so easy periods in my life. When I was a teenager I was fainting, puking on those days. Now I take maybe 1 or 2 ibuprofen on the first day on my period. I could not imagine 3 years before that I will still have painfree time in my life. My endo is not back yet. I don't get bloated so badly like before. I can function in life and rarely take painkillers. This worked for me. I don't eat any dairy, meat, eggs. I'm not gluten free but I heard it helped lot of ppl who avoid that too. I consume once in a blue moon tofu but some ppl are more sensitive and gives them pain. With plant based diet it's good to supplement b12.

And like others mentioned yoga.

All the best for you! It can be manageable.

[Brambledoggy in reply to Hajnal]

Hello! Just curious, you say you had three surgeries in four years. Gosh. Poor you. Please may I ask exactly what kind of surgery was undertaken? Good post BTW. Nina.

[Zippy1603]

Thanks everyone. I have suffered with the symptoms of this for 19 years. I'm currently trying to conceive which is the only reason a laparoscopy was even suggested. I've been trying to conceive for 2 years. Thankfully my period this month after surgery was pain and trouble free so I'm hoping I can continue along that road. X

[StefaniaJW]

The best source in the internet is Katie's blog healendo.com.

She saved my life and is the best on the subject. But if they have performed ablation on you, you will probably need excision surgery in the near future.

[Anastasia17]

Hi Zippy, like you I am a newby to this endo stuff. After being told by the GP in February that nothing could be done when I had a flare up and was in pain in front of him. I did my research, found this amazing website and, on the advice of like bodied and minded ladies, I have put myself since May this year on a gluten free, dairy free, chocolate free, soya free, caffeine free, the majority of these foods would give me diarrhoea, others like dairy gave me tummy pains. I also stopped tomato puree as I would automatically get cystitis and I have been beans free (borlotti, black beans, chickpea, etc) as I was doubled up in pain about 13 years ago. The diet helps immensely, it reduces the pain episodes, it doesn't solve everything but it helps a lot. As a family, we still eat together as I can have potatoes, rice, gluten free pasta, chicken, vegan yoghurts, biscuits, ice cream ("for me only). If you need recipes books, diet advice don't hesitate to ask, we are all in the same boat.

[Moonglo in reply to Anastasia17]

Hi Anastasia I'd love to see some recipes! What books do you recommend? X

[Anastasia17 in reply to Moonglo]

Hi Moongloo, apologies for the delay in replying, GCSE results, etc. I currently have 'Bosh! Simple recipes, amazing foods, all plants' . It's not endo specific, but the pasta can be replaced by gluten free pasta, etc. Also, I received the following advice when I started to change my diet: the following books that are not marketed as endometriosis friendly useful. Deliciously Ella Everyday is plant based and gluten free although she does use tamari (Japanese style soya sauce) in some recipes so it is not soya free. The refined sugar free desert section is v good in this book. Hugh Fearnley Whittingstall's Much More Veg has inspiring vegan recipes for every vegetable you can think of and most recipes are wheat free or can easily be made gluten free. I'd also recommend checking out Dr Michael Greger's Nutrition Facts website and books. He doesn't specifically address endo but has the latest peer reviewed scientific data about anti inflammatory diet -which is what the endo diet is - and generally about eating to prevent disease.

We can still incorporate our diet in family meals, we shouldn't exclude/feel excluded from family meals, there's nothing worse for the moral to be made to feel different.

Enjoy the recipes!

[Moonglo in reply to Anastasia17]

Thanks! And congratulations! X

[Faybee87]

Hi, I'd recommend the Period Repair Manual by Lara Briden. I don't think it's wise to cut out everything in one fell swoop as it's overwhelming and you don't know what's working that way. I've been following the recommendations on this book though and seen a real improvement (I was already gluten free).

Hope you're recovering ok and coming to terms with your diagnosis xx

[asoullessstatic]

Sadly, theres nothing you can do to stop it coming back, it might, it might not. However, I've found that tweaking my diet, has meant that I've managed to manage some of the GI symptoms I've had with the endo. It takes work though, everyone is different, different foods set it off for different people. I started abotu a year ago keeping a diary, and if the GI symptoms kicked off, I noted where it was in my cycle and what I had eaten that day. After a few months I started to notice patterns. Anything with oats or grains set it off, I suppose because these are harder to digest. Not having enough fiber in meals also set it off, to the point that I couldn't regardless of how I tried get enough fiber into my diet to help, I started taking fibogel supplements and everything moves along fine. I wish I could give you more answers, but the truth is, combating it with diet will involve you getting to know your body, how you react to foods, and trusting yourself with it.