I'm on day 1 of the Endo diet. Carolyn specifically recommends you remove the following from your diet:-
Sugar, red meat, processed salt, dairy products, wheat & rye, tea coffee and fizzy (anything with caffeine), margarine, sit products, tinned food, manufactured meat products such as burgers & sausages as well as sweeteners such as aspartame, saccharine, monosodium glutamate and food additives, chemicals, preservatives and nitrites.
I'd previously given up wheat & dairy which has helped but I think my main problem is sugar.
Here's to a happy & healthy 2018 for you all.
P.s if you have any other tips feel free to share on this thread. I'm stage 4, on decepeptyl injections & soon to start HRT. My choices as I see it so far are to have an oopherectomy (my consultant won't touch the bowel area) or get referred to another consultant to have everything removed as well as the Endo that's sticking my uterus to my bowel. 3 surgeons so far have refused to do it due to dangers but I've heard other women having this kind of surgery & been OK with it. My preference is to have everything removed. I don't want this disease in my body & if they can remove it, that's what I'm going for. Would you do the same?
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Kaiser_susie
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Hey, I went through the same dilemma of oopherectomy Vs excision. My BSGE surgeon was willing to do either.
The GnRH experiment failed to help ( I reacted adversely to it) I so I went for excision since I didn't like the idea of removing healthy organs. Also, advanced RV endo tends to be hormone resistant as it can develop the ability to bio synthesise its own oestrogens anyway.
But it sounds like your endo is significantly more extensive than mine, bowel surgery risks higher so a harder decision to weigh up ( I really feel for you, reaching my decision I found hard enough) . Mine was a 3.2 cm bowel to vagina plus adhesions, plaques of endo on bladder and u/s ligaments plus above both ovaries. But not a frozen pelvis and not involving the uterus. Below Some links I found helpful
I still eat Pure marge and (organic) soy (rationale: I'm not intolerant, the endo diet is 10 years scientifically out of date and more recent research indicate it's net slightly beneficial for endo as there are only limited receptor slots and soy phyto-oestrogens are still much weaker that human estradiol) but otherwise am on a very similar diet.
Are you struggling with finding foods to eat? I’ve recently started the endo diet and I just don’t know what food I can or can’t eat. Do you have any recipes?
I'm not really finding it difficult to find things to eat, apart from a quick bite at lunchtime, unless you're happy with plain salad, there's not really a lot that I find interesting to eat when on the go.
I do things like chicken with paprika, salt & pepper with roasted vegetables. Last night we had king prawn stir fry with lots of vegetables but no sauce, just some olive oil & seasoning. I guess it's about experimenting.
The book does provide lots of recipes but they're all vegetarian & a little fussy by adding seasoning that I wouldn't normally have in the cupboard. I add chicken or fish & do my own variations.
How old are you? Im 32, have the same type of Endo, and my surgeon has not recommended removal of my ovaries. Thank god, cuz it would never happen. I also dont have any children so i know for a fact they wouldnt offer me that treatment. Although not involving my uterus, my ovary and fallopian was wrapped around my colon. Actually not in the pelvic area, but up in my abdomen. I had a team of surgeons, gynae, colorectal and urologist (bladder involvement too) and had excision. It didnt work, it come straight back and doesnt really respond to anything (im trying a new drug next month). After 2 chemical menopauses, id rather have the endo if im honest. Ovary removal should be very last resort. Are you under BSGE, if not, you should be. Good luck. Xx
I'm 35, no kids and I am worried about having ovaries removed from the point of view of health problems in later life, but I also want to permanently get rid of Endo with no chance of it coming back. I'm just finding it difficult to weigh up the pros and cons
Have you tried Zoladex? You really need too. Taking ovaries is not necessarily a cure. My endo is still active even when my ovaries are shutdown. It will also give you a taste of menopause. Its a big decision, and its one only you can make, but dont let no Dr force you into it. If you aint at a BSGE centre you need to be at one. Complex surgery is very daunting, and scary but it can and does help people. Im trying a new drug next month. A surgical menopause should be last resort, especially seeing as for some people its unfortunately not a cure. It isnt for me xx
Not yet, I've just started decapeptyl but I think it's the same thing isn't it?
Not at bsge centre yet but going to push for referral now because my current consultant is obviously not competent at getting rid of it all, without removing ovaries.
How long did it take you to recover from excision? Do you take HRT with zolodex
By law, because you have bowel involvement, you should be under BSGE. I had my diagnostic lab at a normal gynea. I was in theatre 5 mins. Sent home, returned for Zoladex, then referred as urgent to BSGE, and by the sounds of it, so shouldve you! He shouldnt even be talking you through your options. That should be an endo specialist! Nice have new guidlines, print them off and hand them to your GP or Consultant!
First zoladex i didnt have HRT. It was bad 😂. Complex surgery was ok, as surgery could be! Had to have an epidural plus aneasthetic. Unfortunately surgery wasnt a cure for me either! Mine returned within weeks. I tried the pill back to back. It worsened my endo. So i was put on a second course of Zoladex with HRT this time. Tbh i forgot to take the HRT so did a full 4 months without. Ultrasound showed endo wasnt responding. Ive just had 4 months to get it out my system. See my specialist at end of this month. Im trying a drug thats not really available on NHS for endo due to expense, but because im a severe/complicated case my consultant has promised to get the NHS to prescribe it. I have tried everything else at this point and i still wouldnt offer up my ovaries, and nor has my specialist even suggested it. I think you need a Dr like mine tbh. Who will at least try other options before going to such drastic measures. It sounds like your consultant wants a quick fix. Xx
It can be very complicated but dont be disheartened. Everyones endo responds differently to different treatments. Some will find major relief with something as simple as the pill. Others, surgery will be a cure, most times only temporary, but thats usually years, sometimes permanently. Other people find Zoladex an utter god send! And some people stay on that longterm. The thing is, you dont know til you try. Im still looking for my cure but tbh, id rather do that at 32 than go all out and permanently get rid of my ovaries on the off chance it might cure my endo. And it is a might too, one you can never reverse like just stopping medication! Good luck. I hope you find what works for you xx
I'very been in the Endo diet since last New Year. I am finding the folllowing recipe books helpful - Deliciously Ella Every Day (especially good for sugar free sweet treats) and Hugh Fearnley-Whittingstall's Much More Veg. Both have tasty vegan and soya / sugar/ gluten free recipes. Another tip is when baking cakes always freeze a few portions so that you have got some sweet goodies in the house that are endo friendly. Just defrost the cake in the microwave on lowest setting for 30 secs or so when you need a treat.
This is my favourite endo-friendly recipe, so I thought I’d share. Prep and cook time roughly 1 hour total.
Chicken Noodle Soup
Serves 6
Ingredients:
4 skinless, boneless chicken breasts
Sea salt and black pepper
3 tablespoon extra-virgin olive oil
1 medium yellow onion, chopped
4 carrots, sliced in to 1cm thick rounds
3 stalks of celery, sliced in to 2cm thick rounds
2 teaspoons minced garlic
8 cups water
Handful of fresh flat-leaf parsley
300 grams of uncooked gluten free spaghetti
1. Generously season the chicken with salt and pepper. In a large pot, heat oil until shimmering. Add the chicken breasts. Cook until deep golden underneath. Turn the breasts, and cook on the other side until golden. Remove breasts and place them in a bowl until later. Note: The chicken is not cooked through yet; It will finish cooking in the soup.
2. Add the onion, carrots, celery, and garlic to the pot. Season with salt. Sauté until the onions are slightly tender and golden.
3. Return the chicken to the pot, pouring in any juices from the bowl. Add the water and parsley to the pot. Increase heat to high. Once the soup begins to boil, reduce the heat to a simmer. Cook for 20 mins. Add the pasta to the soup and cook for another 15-20 mins, until the pasta is cooked as tender as you like it.
4. Turn off the heat. Remove the chicken from the pot and shred the meat using two forks.
5. Stir the shredded meat back in to the pot of soup. Laddle the soup in to deep bowls, and serve hot.
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