Shall i give up caffine and alcohol? - Endometriosis UK

Endometriosis UK

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Shall i give up caffine and alcohol?

Netti451
Netti451

I keep reading that alcohol and caffine are triggers for endo pain. I dont drink huge amounts of either but i do love a good quality wine or coffee. I have about 3 coffees a day in the week. Less at weekends. I like white wine on a friday or saturday evening. I am gutted at the thought of having to give these up. When i think back i went to rome in december and had an amazing month pain wise its was more managable than ever despite the wine and espressos that i was living on for 4 days. It was a one off good month. I went to a wedding on friday this week and because my pain had been so bad all week i decided not to drink for risk of making pain worse / triggering pain. Yet i woke up saturday with terrible pain again.... my pain is nerve based in my legs and urethra/vulva areas, my bowels are unaffected. Interested to hear from others who have found giving up these items beneficial or not??

15 Replies

Drinking wine is v v harmful. I have seen it in my case, after drinking even one glass it starts paining and once I went on holidays had wine for 3 continuous days and can't say how much pain started. Since then I have been worse because if the lessons increase they remain there.

Both coffee and alcohol are v harmful. I know we say it's very less but it's so unfortunate the kind of problem this is we have to stay out. I love wine and just can't stand not having a glass once in a while. I get daily pains and condition is not good.

Sorry to give you bad news.

I like my coffee also, I do like wine but don’t drink it a great deal due to pain side of it as obv not able to take meds, so it’s a case of have some wine and be in pain, or vice versa. Last wine I had was Christmas Day. So I’m hoping this cbd will have some affect.

Hi there

I gave up caffeine last year and feel much better since. A good decaf option is possible and I really don’t miss it. My energy levels are much better and more consistent. I have given up alcohol during a short cleanse program and have reduced my intake since then. I can’t pin it down to flaring up endo pain but look and feel so much better since limiting it ( approx 2 glasses of wine week) .

I’m interested to hear your story re your pain areas. I have nerve damage in one leg and buttock and my pains are in the same areas as you. Can I ask what treatment you have had/ are having? Are you under a specialist centre?

I gave up caffeine for endo but now, I occasionally have the odd cuppa and I’m fine. I use almond milk in my de-caff coffee and cereal. I try to avoid dairy - that makes a big difference but it’s very difficult because milk is in almost everything from orange juice to crumpets. I also avoid red meat - I realise I can’t have it because I end up with symptoms again xx

Personally, I think it's all about managing it for you. If your coffee intake daily is making your pain worse, then cut it down or stop it completely. It's worth stopping with the caffeine and seeing if it makes a difference for you. The same with the alcohol. Cut down and stop, see how much of a difference it makes, and if your pain reduces then it's worth stopping. But if you don't see much of a change, then you could have maybe one coffee a day or one glass of wine in the week. Whilst some people might suffer hugely from caffeine or alcohol it might not be so much as a trigger for you - it's about you personally and managing your diet around your pain. Hope it gets better xx

I used to drink a LOT of coffee like 4 or 5 every day and was always in considerable pain but I gave up coffee for mint tea around 3 months ago and the difference has been amazing. I still get pain but it is no where near as bad as before. I can’t speak for the alcohol part though as I don’t drink regularly enough for that to be an issue. I have my first lap on Monday and I am worried 😫

Netti451
Netti451 in reply to Denised90

Dont worry about the lap its not great but its also not too bad. I know the biggest worry is what they may find. For me i actually felt relief at a formal diagnosis. Getting a clearer picture of what you are facing helps with the stress.

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Hi netti. Since I was diagnosed severe endo oct '16 I've radically overhauled my diet. Stopped eating sugar gluten milk caffeine red meat. So it's really tough and I'm sorry but I'm not going stop drinking alcohol as well!!! My diet's so restricted now i need a bit of enjoyment! I drink gin only, a few once a wk and don't seem to suffer. I had excision surgery 7mths ago and a mirena coil 5mths. I also exercise a lot. Hope this helps!

There is currently no evidence base to suggest why moderate alcohol or caffeine intake would make endometriosis symptoms worse, although some people do find that cutting them out helps. The things you read about the inflammatory diet are mostly not evidence-based and a lot of it is pseudo-science. If you think it will help you, try a serious exclusion period for a month or more where you cut them both out, and then add one back in gradually and see what happens.

Netti451
Netti451 in reply to wanwood

This is my most hopeful reply. 😀🤞

I think everyone is different. For me, for over 10 years I only had endo pain during my period. I would avoid alcohol for a good few days before period due as I had too many experiences of it making me very sick if period hit early. I'd be on strong painkillers in bed during period so didn't even think of alcohol then. Rest of the month it made no difference- I'd have some months where I happened to not have any alcohol but still have period from hell and vice versa. Now my endo pain is daily and due to finances and lack of social life due to endo I've had about 3 days since new year where I've had alcohol.

Coffee - if I'm already in pain even half a cup of coffee triggers god awful contraction pain so I avoid it and working on eradicating it completely all month.

I'd suggest quitting one thing at a time to see what triggers your endo. Maybe 2 months no alcohol and see what happens etc. If it makes no difference to you then enjoy that glass of wine and then test out removing coffee etc. It can feel really overwhelming being hit with 'you need to do this endo diet' etc. My bigger trigger is citrus fruit. If I have any then later that month when period hits 10/10 times im in debilitating pain and vomiting. From my experience one thing that helps one person has no affect on another. It's working out what works for you. Good luck! Xx

I don’t drink caffeine as I don’t like tea or coffee luckily but I have found alcohol is the worst trigger for me. I cut it out completely, both are huge inflammatory sources. I’d recommend cutting them out for a month and seeing how you feel.

Hugs xx

Probably your best bet is to keep a food and symptom diary and do your own scientific approach eliminating just one thing at a time for at least several months. If you're interested the actual scientific research I found is below. Ncbi is a good resource to search in for science studies rather than pseudoscience, though caution is still needed for things like size, scope, design (blind, double- blind etc) , bias, and funding of the study.

The most positive dietary research trial I came across was actually on gluten, and the study showed over 12 months that eliminating it did have a positive effect on endo symptoms. (large scale but not blind). Gluten is known to be inflammatory due to gluten itself but also due to things called Amylase trypsin inhibitors (ATIs) . Although the specific reason is unclear the retrospective study lends weight to the view excluding it can be beneficial for Endo with 75% of people seeing reduced symptoms after 12 months.

ncbi.nlm.nih.gov/pubmed/233...

Wine is on balance sadly generally unhealthy for most people for lots of reasons and there is plenty of large scale long term research supporting that (google articles on why the unit allowances went down so much for the facts). There is an ongoing debate about whether resveratol may be beneficial or phytoestrogens harmful but we do definitely know that alcohol puts a strain on your liver, and the liver has an important role in the endocrine system so reducing or avoiding wine may well be beneficial indirectly due to that reason

womensinternational.com/pdf...

ncbi.nlm.nih.gov/pmc/articl...

researchgate.net/publicatio...

Since my surgery I've been physically unable to drink wine and after a few months missing it horribly (about 6 actually) it is amazing how you adapt and get used to a new regime, the incentive just has to be there to do it. I dont even like the smell anymore now.

I've not really looked into caffeine much for endo, though I do know tannins in both tea and coffee hinders iron absorption, so cutting back again may help ease some endo symptoms if you are low iron (I'm on iron tablets and Ive been told not to drink cafffeine 2 hrs either side for this reason) . But I had already switched from coffee to tea and cut down to one a day in the morning to help with another health condition due to its carminative properties.

At the end of the day your body is unique, as is your endo and so you will react in your own unique way to different dietary elements as you will to different medications.

Its as much about about finding a balance that works for you as what this endo diet or that research study says.

Hope some of this helps you work through what is right for you.

Netti451
Netti451 in reply to Starry

Wow Starry you have been busy doing your research! Thanks for the info. X

Starry
Starry in reply to Netti451

Yeah (embarrased emoticon). I went through a slightly obsessive phase a year or two back soon after my diagnosis of researching diet stuff I read online and trying to find out actual evidence to sift out the myth and misinformation, from actual facts. Just take whatever's useful. X

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