NO MORE PAIN with Keto diet: After 15 years... - Endometriosis UK

Endometriosis UK
47,572 members39,734 posts

NO MORE PAIN with Keto diet

claudia_d
claudia_d

After 15 years of endometriosis I kinda just accepted my fate. I am scheduled for surgery after my b-day and thanks to my symptoms I am not working. This gave me a lot of time to research. Driven by pain and a belly so bloated that could easily earn me a seat in the tube I came across this article healthline.com/health/keto-...

I can confirm that my endo belly has reduced to normal (it is an anti-inflamatory diet, blood tests show it used to be 6x higher then normal) and now I barely have days when it hurts. I know is not removing the problem entirely but i really wanted to share this with you ladies because I want you all to feel amazing or at least normal. I know how much it can take away from you and nobody understands. YOU have nothing to lose if you try. Just a few pounds (I lost 3kg in first week). Do your research (what works for you) and plan ahead what to eat when you go out & meet friends.

(UPDATED)

I found some articles that back this up BUT some women have experience stomach issues. Check the thread below. Keep an eye on what makes you feel good. Please follow a HEALTHY VERSION of it (no fried food, or saturated fat). Also a lot of improvements have been seen with just a low carb diet. Check also the thread below.

healthline.com/health/keto-...

thriveglobal.com/stories/8-...

naturalearthymama.com/keto-...

Please don't take my word for it, be a little Sherlock Holmes and find the truth yourselves. And feel free to ask me anything.

I hope this helps

XOXO,

Claudia

57 Replies
oldestnewest

I totally agree and posted something similar a few months ago! Unfortunately it seems not a lot of people believe diet can effect endo so much and many drs only know about medication and surgery and not nutrition. But it deffo helped me! ❤🙏

How long have you been on the diet for? After 6 weeks on the AIP diet (basically eating like a Keto diet) I noticed a massive difference x

Afrohair
Afrohair
in reply to Littlepeax

Hope you don’t mind me stepping in but what does keto diet consist of

EJBx
EJBx
in reply to Afrohair

Keto is a very low carb diet designed to get your body to use the fat already stored in it and burn that for energy instead.

Littlepeax
Littlepeax
in reply to Afrohair

High fat low carb and sugar. So eating lots of organic meat, avacardos, extra virgin olive oil, cheese, eggs, nuts. Basically whole natural foods and no ready made ones or refined ones like bread and pasta. Its honesty the best diet for me anyway to help my endo symptoms

and FISH. Omega-3 rich fish is pivotal in a keto anti-inflammatory diet. I have sardines, mackerel and salmon mostly

Yes I have Salmon very often (only wild salmon)

Afrohair
Afrohair
in reply to Littlepeax

Cheese is not useful for a person with endo though is it.?is normal mozzarella ok as I didn’t find mozzarella which is made out of goat milk .does that sound stupid??i hate goats cheese is there any other cheese I can have

Littlepeax
Littlepeax
in reply to Afrohair

Everyone is completely different. Try the AIP protocol. That's what I did and found out that cheese doesn't make my symptoms any worse. But yes alot of people with endo stay clear from it. I usually have feta, mozzarella or halloumi but not very often. Maybe once/twice a week. Check out how the AIP diet works online, its amazing. X

Afrohair
Afrohair
in reply to Littlepeax

I’m gunna try it I love Hall umi

I noticed after a week, which was quicker than I ever imagined.

claudia_d
claudia_d
in reply to claudia_d

He has a lot of high quality information gb.ketocycle.diet/?utm_sour...

Is this for weight loss?

Is famous for weight loss, but I started it for endo

Me too

I’ve literally just started the keto diet today, mainly for its weight loss benefits but now I’m even more determined to stick to it! Thank you for sharing!

claudia_d
claudia_d
in reply to EJBx

I hope you get great improvements! Please take care and follow the healthy version of it and take time to plan for those times when we can be tempted: like going out, days when we are upset and stressed etc. My go to treat is this keto chocolate cdn.shopify.com/s/files/1/0...

EJBx
EJBx
in reply to claudia_d

Oh my days, that stuff is amazing! My boyfriend and I searched every local supermarket and finally found some - it taste like Ferrero Rocher! We’re currently making some keto cookies with it 😍 we use queenketo.com/super-simple-... to make our cookies and might try making some keto doughnuts and cheesecake!

claudia_d
claudia_d
in reply to EJBx

You have no idea how much joy this brings to me! <3

Absolutely agree. I have undergone hysterectomy and oophorectomy due to extensive endo. Post surgery I developed another auto immune disorder RA with no let up in pain and severe indigestion, bloating and nausea. Switched to a low carb diet especially ruling out all forms of simple carbs like refined flours and sugar absolutely. Oats and wholegrains don't seem to trouble me as I have tested and realized. Even milk and milk products are big culprits with yoghurt being the only exception. Fresh fruits and vegetables seem to be the best with all symptoms almost disappearing. Low fat meat, fish and eggs also don't seem to create any issue. My personal advise would be to go on a fresh fruit and vegetables diet for a week to detox the system. Then gradually reintroduce one type of food at a time to identify the foods which are triggers for the individual as it can vary greatly. The impact was tremendously positive with the symptom free periods being longer if the diet was strictly adhered to. Hope this helps. Have replaced sugar also entirely with jaggery, it has helped me a lot.

Littlepeax
Littlepeax
in reply to PCollind

Agree, this is similar to the AIP diet that has massively helped me

thanks! the link doesn't work but I'm familiar with the keto diet. I'll give it a try. good luck with your surgery

Unfortunately for me Keto left me in a gastroenterologists clinic with severe stomach problems. I can not eat white bread etc anyways, but full Keto left me burning, like someone had lit a furnace in my tummy! He state any massive switch can shock the system.

So I follow this rule now:

115g max Carbs per day (from good sources)

109g Fat (from good sources )

80g protein (meat, fish, huel shakes)

This seems to work better for me, and prevents the burning. I don’t go into ketosis (but as a diabetic I’m not sure I want too)

Also, fast from 8pm until 12noon. This time suits me but others may have different time plan. But it means all my calories are eaten between 12pm and 8pm i would like to extend this too 3-8 at some point but it’s hard for me because I’m always hungry.

I’m not here to diss Keto it has amazing result s for some people, others it’s just too harsh. It’s all about finding out what works for you and always tweaking.

My pain hasn’t left, but then again my surgeon hasn’t really taken anything away either and I’ve stage IV Endo that is deep, on top of fibromyalgia etc.

StefaniaJW
StefaniaJW
in reply to Jabr007

Your surgeon hasn't taken any endo away? You need to change surgeon and get full excision ASAP

Jabr007
Jabr007
in reply to StefaniaJW

Yeah, he went in and allegedly freed the stuck down ovaries but couldn’t get any endometriosis as it’s deep, so had to be referred on to a higher specialist. We don’t get excision here in Ireland unfortunately! And to do so privately in England would be expensive.

Afrohair
Afrohair
in reply to Jabr007

You must do the diet gradually not all at once

claudia_d
claudia_d
in reply to Afrohair

agree, I had 2 weeks transition

claudia_d
claudia_d
in reply to Jabr007

I am so sorry to hear that, this is why I urge to observe on how our body responds. What exactly from the diet has caused the sever stomach problems. Did you had enough fiber in your diet?

Jabr007
Jabr007
in reply to claudia_d

Hi Claudia it seems the reduction of Carbs to such a low level caused the issue. I now attempt to keep my Carbs low and good carbs. And everything else balanced out for this. This seems to be working for me, whereas the 20/30g carbs per day was harsh for me personally. I eat and enjoy a variety of vegetables fresh, meats, small amount of fruits nuts and seeds. So I would assume with that enough of all nutrients but I do also suffer with absorption issues regarding my iron too x

Hidden
Hidden

Hi ladies,

I think you should all be careful when following such a diet. There will be fors and against any type of diet and you should be conscious of the these before following any.

I agree that diet indefinitely has an impact and each of us is different so it will be a case of trial and error to find what works best for you individually. The Keto diet is associated with high fat so may lead to high cholesterol and heart disease in the future... although I think genetic will affect this.

For me I only had to cut out gluten which was my biggest source of inflammation. I also restrict milk now. I can have cheese and Greek yogurts. For carbs I have brown rice, quinoa, oats etc which are complex carbs which are slow release - vital if you are working out at gym. I find I don’t function well without.

When I changed my diet just over 12 years ago I thought I was celiac and managed all my symptoms cutting out gluten foods but having a balanced diet (lots of veg, ocassional meat and fruit but mainly berries was my preference which I could digest ok). It wasn’t until 8 years after that I was diagnosed with endo. So yes I truely believe you can manage the symptoms with diet. When I explained to my first consultant he didn’t listen and basically said it was rubbish however the my new/current consultant I spoke with just a few days ago and acknowledged a balanced diet will prevent inflammation and affect the colon/bowel.

Littlepeax
Littlepeax
in reply to Hidden

Yes it's what works for you. I found by cutting out brown rice, bread and potatoes hugely helped with my endometriosis symptoms. Potatoes for me caused a huge amount of inflammation in my body. I switched to sweet potatoes and have no problems whatsoever. By eating mostly whole foods less refined, less processed (less sugar and salt) will only ever be a good thing. New research has shown that not all is clear on high cholesterol and heart disease. Its more nuanced than that with high triglycerides and insulin resistance being better markers for heart disease both of which keto can improve.

Afrohair
Afrohair
in reply to Littlepeax

Have you tried organic rice it worked for me better than normal rice

Littlepeax
Littlepeax
in reply to Afrohair

No but I might give it a try, thanks 😊

claudia_d
claudia_d
in reply to Hidden

I am so happy you found what works for you <3 <3

PCollind
PCollind
in reply to Hidden

Almost similar to what has really worked for me to keep inflammation under control. Milk, white rice and refined carbs or processed foods are major triggers. Keto can be risky as high protein diets are not well tolerated by all individuals.

The effect of diet on use a treatment for most illnesses is overblown, and I know this is going to sound harsh, but your personal case study isn't evidence. We know that Keto is useful for a small subset of people and, we are talking, very small. However for people who's endo is complecated by GI issues (endo often goes hand in hand with Inflammatory Bowel Disease), or other hormonal conditions such as PCOS, Keto is contraindicated and can often make glycemic control worse. Further more badly done Keto diets can increase blood pressure, cause kidney stones, constipation, nutrient deficiencies and an increased risk of heart disease.

Keto could be an interesting alternative to help (not treat, help) certain conditions, and has been demonstrated to cause weight loss for people, however this weight loss is often short lived. The big thing about Keto that has been shown time and time again is thatit is hard to follow and it can be heavy on red meat and other fatty, processed, and salty foods that are notoriously unhealthy. It is not, for the vast majority of people, a systainable way of eating -which leads to problems, such as we do not know much about its long-term effects, probably because it’s so hard to stick with that people can’t eat this way for a long time.

It's a case of trial and error, working hand in hand with a medical professional to find out what is best for you. I think it's useful to tell people they are going to feel better for going on what is a crash diet they likely wont be able to sustain, and scientific evidence is not a few webpagse. The reason doctors are skeptical (and even as a research scientist myself, I am skeptical) is because the evidence to demonstrate a positive effect is non existant, and the small scale studieds on the role of diet on endo have yeiled little positive results.

This is not to take away that you feel better now, sometimes improvements in general health can help, and a specific diet depending on your genetics and metabolism can help too, but honestly the evidence that this is a general protocol to be applied to all does not agree, or it is severely lacking.

Claudia is not claiming it should be applied to all. She clearly states:

Please don't take my word for it, be a little Sherlock Holmes and find the truth yourselves. And feel free to ask me anything.

I'm a postdoctoral scientist in molecular medicine, with a PhD in the role of food in inflammation in type 2 diabetes.

I don't need to take peoples word for it, I have quite literally sat in the lab for 18 hours a day and done the research myself.

😴😴😴

Claudia is not claiming 'it should be applied to all' simple as that 😁

Littlepeax, you have been such a sweet fearless defender. Thank you, sending hugs.

😉🤗 xxx

Hello,

First of all thank you for joining the conversation, I don't think you're harsh.

I want your critical thinking and I am happy to have around us someone with such expertise.

I believe you have raised some really important points so let's continue this conversation:

"Further more badly done Keto diets can increase blood pressure"

"Weight loss is often short lived"

"The big thing about Keto that has been shown time and time again is thatit is hard to follow and it can be heavy on red meat and other fatty, processed, and salty foods that are notoriously unhealthy"

- Of course this will happen if you will follow the unhealthy version of the keto diet. At the end of the day we try to get healthy so fried/processed food, saturated fats should be a rare indulgence. I will add this specification in the article.

"Working hand in hand with a medical professional to find out what is best for you."

- I am currently doing that by taking periodical blood tests to measure inflamation levels, pelvic scans. I also get medical support for the IBS.

"a crash diet they likely wont be able to sustain"

- I found it fairly sustainable, although I did took more then a month of research, planning, had a transition period, had a strategy on what to eat/drink on social events .

"but honestly the evidence that this is a general protocol to be applied to all does not agree, or it is severely lacking. "

- my purpose is to tell a story, start a conversation, see what other women have experienced

"The reason doctors are skeptical (and even as a research scientist myself, I am skeptical) is because the evidence to demonstrate a positive effect is non existant, and the small scale studieds on the role of diet on endo have yeiled little positive results. "

- Nothing tipped the scale for me like this. If it changes the life of 1, isn't it worth it?

In regards to doctors, I may be biased but unfortunatelly not all doctors have our best interest, nor offer the best information .

I lost my job as I was loosing too much blood after I was prescribed Cerazette and none of the doctors changed my treatment. That is the default prescribed treatment and with 2 spacialists they never recommanded anything that made me feel better. On the contrary.

Fun fact, I had a "specialist" saying "you secrete cortisol from your ovaries"

Also you have to consider that some of those students that barely passed the exams are doctors somewhere.

Kind regards,

Claudia

I agree with you Claudia. I have put myself on an exclusion diet, ie, I don't follow a specific named diet, I only eliminated the food that caused me pain and that is free of :gluten, dairy, soya, chocolate, caffeine, brown rice, tomato purée, hot spices. It works for me and I can find milk replacement. It defo reduced the pain. I think that diet should be automatically mentioned to all new patients, it would save a lot of aggravated symptoms and women who feel more in control of their life. I totally understand that it doesn't work for everyone but at least make them aware instead of letting them suffer. x

100% agree!

I had to ask a lot of specialists on and on about a diet. Nobody mentioned it to me.

I know, I had the same experience as you, but when I tell it, forum owners and women suffering from endometriosis tell me I put weird ideas into people's heads and I should not be promoting a certain diet that worked for me because it's dangerous and people will think this is an illness that can be put into remission.

Guess what. It can be put into remission. Just because it's chronic and progressive doesn't mean it can't be tackled in an effective way through nutrition. I haven't taken any hormones nor undergone surgery yet it hasn't gone worse in the past 4 years of dieting.

Afrohair
Afrohair
in reply to StefaniaJW

wouldn’t someone have to look inside you to know if it’s got worse apparently you can manage pain but not growth

StefaniaJW
StefaniaJW
in reply to Afrohair

No. For example if I have an endometrioma that hasn't grown in 4 years, they can see that on the ultrasound because they can measure it at every appointment.

In my case it managed growth as well and tremedously, I might add

Afrohair
Afrohair
in reply to StefaniaJW

did you have a cyst ?

Afrohair
Afrohair
in reply to Afrohair

How did you know it stopped growing if you didn’t have a cyst

Afrohair
Afrohair
in reply to StefaniaJW

Haven’t had a response so I will take it as no evidence to back that up I heard endo can make it’s own estrogen and grow regardless

Just curious if this worked for anyone with stage 4...

StefaniaJW
StefaniaJW
in reply to jburd

It does but you need to undergo full excision with a highly skilled and trained excision surgeon as well

Hey

I believe diet helps...

I did the anti inflammatory diet.. no processes Food, sugar , alcohol and gluten.. felt fantastic .. that was 3 years ago not looked back

I completely agree! The first time I ever got relief was in 2010 when I was trying to impress my super healthy boyfriend — he ate EXTREMELY healthy (no processed foods, supplements, no gluten or dairy). That month was the first time I ever had relief from gastrointestinal symptoms, and my periods weren’t as painful. I was HOOKED and it changed my life. I started bleeding rectally in Sept 2018, so I know the disease didn’t go away, but it truly made it manageable. Setup for a lap in March of this year at CEC in Atlanta as fatigue/rectal bleeding is pretty bad....but I attribute being able to function for the last 10 years solely to my diet (I am 35). I did not know all my symptoms were endo until March of 2019—I just thought I had a lot of period and digestion issues. The diet has been so life changing that I will continue to follow it post lap.

Btw, my healthy boyfriend is now my healthy husband. Ha!

claudia_d
claudia_d
in reply to ala_gray

Great stuff, super happy for you!

You may also like...