Life without! : Hey guys, I'm... - Endometriosis UK

Endometriosis UK

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Life without!

CryBaby91 profile image

Hey guys, I'm undiagnosed but trying out some of the diet changes to see if it has any impact on my symptoms currently. I'm crippled with stomach pain every single day, and I eat/drink everything on the naughty list lol. My first sub has been milk for lacto free, it's had a tiny impact on the indigestion and other GI issues but still bloated and sore. So I'm thinking of ditching my beloved much as it pains me!

Any advice for what on earth I can do for energy if I can't have caffeine? Could I potentially get caffeine free coffee and not have the same reactions? I'm just desperate not to let it go to be honest, it has been the only thing keeping me awake 😂 but I know it's bad for endo so I'm trying to help myself.

25 Replies

Research a supplement called aswaganda root......for energy but reducing the coffee with caffeine is a small step in the right direction.

I am going plant based with a Coach helping me and gluten free - all this has helped with Endo belly x

CryBaby91 profile image
CryBaby91 in reply to 635703

Oooh thanks I'll have a look for some :) I tried plant based for a few months (not for endo reasons, just wanted to see if it was something we could do) and didn't notice any change in my symptoms, but I've heard soy flares pain too lol and I was subbing my meat for soy products lol. So that could be why :) thanks for the advice

635703 profile image
635703 in reply to CryBaby91

It’s what works for you and your body. I honestly feel amazing inside. But had my Mirena out yesterday and am having heavy bleeding with thick clots. Ugh 😥🤦🏻‍♀️Felt faint but after eating perked up lol!

Been craving homemade potato wedges in olive oil done in the oven 😋

CryBaby91 profile image
CryBaby91 in reply to 635703

Oh no :( I hope it settles for you soon, sending huge hugs! I'm due my dreaded period in about 9 days and can already feel the pain and fatigue building slowly, ugghh. Xx

635703 profile image
635703 in reply to CryBaby91

Oh no....that feeling is dreadful! I am releasing a lot of emotions and coupled with a specific yoga pose. Overall these changes will be so beneficial. Right now......I feel so awful....and am in the change with an injection. Surprised I know my own bloody name.honestly!! 😅🧘‍♀️🌱

Hidden profile image

Hi, I found that instant coffee gave me heartburn. I thought I might have to give up caffeine entirely, but found out by trying it, that black tea with oat milk (instead of cow's milk) is ok for me.

I also daringly had a bodem of coffee (the one with ground coffee beans). I tried it twice on occasions when my stomach felt ok, and I think it was ok on those days.

So, when your stomach is calm, you might be able to test the boundaries. 😉

CryBaby91 profile image
CryBaby91 in reply to Hidden

Ooooh that sounds promising! Thank you so much :)

TBH I tried giving up tea and coffee years ago and didn't help at all anyway. I tried the low fodmap diet for endometriosis. It is an elimination diet that you do for about 2 or three weeks then very slowly reintroduce things to see what upsets you. It's the only diet that ever helped me at all and my endometriosis specialist is in favour. It doesn't force you to cut out everything you like although it is difficult to get the hang of at first but there is a lot of info online.

Good luck xx

CryBaby91 profile image
CryBaby91 in reply to Dogmad6

That sounds like a fab idea!

Dogmad6 profile image
Dogmad6 in reply to CryBaby91

I maybe should have mentioned that low fodmap is not a permanent diet. It's very strict and restrictive for about 2 or 3 weeks then you reintroduce stuff one food group at a time. You soon find out what upsets you and what doesn't. I didn't know I was lactose intolerant for example so now have lactose free milk. (still dairy as I need the calcium, I have osteoporosis).

Coffee is ok on low fodmap but I do just have one good cup each morning, no more and that is absolutely fine for me personally.

As some have said, everyone is different.

Hope this helps and that you sort out what's best for you. xx

CryBaby91 profile image
CryBaby91 in reply to Dogmad6

Yeah I've had a peek and seen that it's one that is just a short term thing. I have my first gynecology appointment on Wednesday, so I'm going to have a chat with her and see what she says about it all. I'm barely eating at the moment anyway because of the nausea and cramps, so I'm hoping she says trying it will be beneficial for me, I know I don't want to go on any new drugs until I have a confirmed diagnosis, I spent years on different tablets for Lupus without any confirmed answer that it actually was no way am I being a lab rat again lol. I would rather do diet and supplements whilst they investigate :) thanks again :)

Dogmad6 profile image
Dogmad6 in reply to CryBaby91

I understand exactly what you're going through. I've struggled with weight loss all my life since starting periods. It's impossible to eat sometimes. Finding something that helps has made all the difference for me. Do hope you feel better soon. xx

I gave up caffeine a few months ago and it has certainly helped - and the lifestyle change is a bit easier if you just sub for caffeine-free coffee. Although do it gradually and not just cut out completely straight away, I made that mistake and suffered awful migraines and fatigue as a result.

As per some of the other comments, low FODMAP, gluten and lactose free have also helped me but I finding it difficult to keep up with (it’s been ~6 mo). I absolutely love food (alas, especially pizza) and cooking, and it’s been a challenge finding recipes and nice food without all my favourite ingredients. I

CryBaby91 profile image
CryBaby91 in reply to june828

I'll have a look at foodmap, thanks so much for the advice!

Hey, my endo specialist recommended I give up coffee and it has made SUCH a difference. I drink about 5 cups of tea a day instead which doesn’t make a difference to my pain. I love coffee and still have a cup every other weekend, but the pain gets loads worse when I do.

CryBaby91 profile image
CryBaby91 in reply to EndoG

Thanks for the advice :) I'll give Tea a go, I've been using the new pg tips with added goodness, but I have had sneaky coffee too 😂

Hi, if you like green tea then this has less caffeine in than coffee and also has a compound in that can help with endo. As someone else mentioned if you do decide to reduce caffeine then do it one cup a week or you may feel awful from the caffeine withdrawal.

I found changing my diet made a big difference to my endo symptoms. Focusing on more anti-inflammatory foods like fruit and vegetables and reducing inflammatory foods like gluten, sugar and red meat helps some people. I can send you a link that might help. Everyone is different though, but it's worth trying some things out and seeing if it makes a difference.

CryBaby91 profile image
CryBaby91 in reply to EmB18

Thank you so much :)

CryBaby91 profile image
CryBaby91 in reply to CryBaby91

Green tea though 🤢🤮

I swapped coffee for turmeric lattes which really energise and turmeric is great anti-inflammatory spice - and I’ll say it I LOVE coffee, I would regularly go to coffee tastings and festivals and did few barista workshops so my interest in coffee was really deep but... my pains were deeper. Now I’d occasionally have coffee but in the first phase of my cycle as it messes up less with my digestion then. And yes, limiting caffeine, gluten, diary and alcohol made a massive difference for me - think 4 days cramps vs 2 weeks every month. Of course every body is different but there is scientific evidence behind many of those food choices too.

Diet-wise, look into anti-inflammatory diet as there is significant evidence about it being helpful in preventing or managing versions chronic conditions - this could help your body to gain more balance. Also Many people find Low FODMAP helpful for endometriosis and IBS like conditions though it’s a restrictive diet (to identify trigger foods and adjust your eating habits accordingly, the restrictive diet isn’t very good long term) and depending on your lifestyle it might be better to implement it with a qualified dietician supporting you. The good news is there are plenty great recipes when it comes to those dietary styles - eg you may want to watch out at your dinners to be Low FODMAP and worry less about other meals, it’s good to start somewhere and then iterate. Take care x

CryBaby91 profile image
CryBaby91 in reply to monika-me

That is fab advice, thank you so much

Decaff all the way..I also loved caffeine but I find it helped a lot getting off it..milk doesn't really kick off digestive issues for me but bread does for some weird reason so I still have full fat milk in decaff coffee but I also use almond milk for cereal and stuff as the almond milk just doesn't make the coffee light 😳 it's weird how it's different for everyone x

I've wondered if decaf would be a good substitute, does it taste like the regular stuff?

I think it does yeah just without the pick me up x


I have given up caffeine, dairy and gluten all recently and it's made a massive difference. I still get Endo symptoms like brain fog and faintness but the pain has almost totally gone. I started drinking caffeine again in the form of tea, not coffee recently and it hasn't caused a flare so I'd say try that as it's been safe for me. But out of everything giving up dairy has made the biggest difference. I accidentally ate some a couple weeks ago and it caused a three day flare so I'd really advise giving it a go. I use Oat milk instead, delicious :)

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