Anyone with experience or advice on changes in lifestyle/diet that help with endo?

Hi ladies,

So I'm pretty new to this so any help or advice would be really appreciated!

To cut a long story as short as I can, I've had a lot of difficulties in the past with incredibly severe pain, bleeding etc, pretty much since I started my periods. Since then, I've had about 10 years of family, doctors and the like telling me that period pain is "normal" (even though I was barely able to move from the pain, fainting, throwing up etc) and just putting me on the pill and recommending painkillers. It's left me barely able to move from my bed and in agony and I was never able to believe it was normal :( ...

About half a year ago, and after spending a lot of time pestering people, I got sent to hospital for an ultrasound. After finding fluid in the uterus and that my uterus was retroverted, along with all my other symptoms, my doctor is assuming it is endo and is sending me to see a gynaecologist. I can't even explain the relief that after so long someone has taken me seriously!

So now I'm at the stage where, before diagnosis is confirmed (apparently that's quite difficult), I want to know about what lifestyle/ diet changes I can make to help? I really want to know what I can do to lessen the symptoms if possible (I can't keep missing work etc because I feel in so much pain). What sort of questions should I ask the gynaecologist when I meet them and what should I expect from my first appointment? Also, I'm really concerned about the impact that this has had on my fertility. I really wanted to start trying for a baby in the next couple of years with my other half, and feel so upset about it. I feel like I'm already doomed to fail from finding out about this, even though I haven't been trying yet and also don't even know the full extent of it, so I know that sounds silly. I feel quite let down that it's taken 10 years, in which I could have been aware and done something to at least slightly help :(

Sorry for the super long essay but I would be SO grateful for any knowledge or help from anybody on here!

Thank you :)

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5 Replies

  • It took me a long time to get diagnosed too. There is something called the Endo Diet which cuts out wheat and dairy to help with bloating, I have found it helpful but it doesn't work for everyone. As for questions to ask your consultant, you could ask him all the things you've asked here, or to clarify what you don't understand or what will happen next. You can always take a list of questions with you.

    Although we all have endo it can affect people differently, some people have more pain, some have bowel issues and some have fertility problems. It's hard to generalise. As fertility is a big concern for you make sure it is on your list of things to ask about. Most of all, good luck with it all.

  • Thank you so much for taking the time to reply :)

    The Endo Diet does look pretty promising, I will definitely give it a go. I tend to avoid wheat anyway as I'd already noticed that it makes me feel bloated and tired afterwards but I eat a lot of dairy. From what I've read after your suggestion, it doesn't look like it's very good to eat as much as I do, ooops!

    I do need to write a list to ask the consultant, really hopeful I'll get all the answers I want but from the little I know already, it seems understanding of endo is pretty limited which I can imagine is very frustrating for everyone :(

  • Hello :)

    take a look on this website:

    Everything you could need to know about the endo diet. I follow it most days although have the occasional bit of dairy and chocolate. I have cut out: meat, dairy, sugar, wheat, gluten., caffeine, alcohol etc. and it has made a massive difference to me (mental health is included in that) but it doesn't work for everyone. Even if you decide not to follow the diet the old phrase "you are what you eat" really is true with us endo ladies as it's these food groups that make the endo worse as they mess up our oestrogen levels. It can only help to watch what we eat and try to have a healthier lifestyle. I bought myself a juicer after my lap and have fresh vegetable juices everyday which helped with bloating and inflammation and also makes sure that all the pain killers I'm taking aren't destroying my insides!

    I go to the gym when I can although don't push it when I am not feeling up to it. I usually do a combination of lifting light weights and cardio and swimming. This helps my pain levels and my mental health again. My mental health is really where this disease gets me the most as I was very depressed to begin with. I see a counsellor as well to help deal with some of the issues that affect me which has been really helpful.

    I strongly advise that you push to be seen by an endo specialist if they suspect it's endo (google endo centres to see if there is one near you). You will need a laparoscopy to confirm it and it would be better if you were being treated by clinicians familiar with the disease. If they suspect endo, all they need to do is a lap - don't let them fob you off with excuses to try pills or whatever, you need to know either way what you are dealing with.

    Personally I am trying an all round approach to battling my endo which is working so far. Hopefully you will find something that works for you :)

  • Oh and P.S I took a list of 4 years worth of symptoms to my consultant. Anything and everything that could be related and all medications that I had already tried. From that list alone she was able to pre-diagnose endo, my interstitial cystitis and vaginismus. Take a note pad and pen with you (trust me, you won't remember what they have told you), think of questions to ask them (are you interested knowing about fertility for example). I was lucky enough to have my mum drive me to and from my appointment as I was in such a state before I went in and even more when I went out, it really helped not having to worry about driving, parking etc. Good luck at your appointment!

  • Thank you so much for your reply :) I really appreciate it. Feel very overwhelmed by the whole thing and it hasn't quite sunk in yet but the support from everyone has been wonderful.

    The diet sounds a fantastic idea, I think it will make a huge difference. Or it is at least worth a go to find out! I try to go running as much as I can (I'm still a bit of a reluctant runner, it doesn't come naturally to me at all, thankfully my other half is good at pestering me to go with him lol), I go swimming occasionally but find it impossible to go when I'm on my actually on my period as it's very heavy and also tampons do not agree work with me whatsoever which is a pain!

    I have had some mental health problems from this, basically whenever I'm on. I turn into a bit of an argumentative monster and I over-think EVERYTHING. Boyfriend struggles with that quite a lot and it's very hard to make him understand fully :( how do you deal with that? I know you've already helped so much but I'd be really grateful to hear how you and other people have coped on that aspect...

    And thank you for the luck :)

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