Recently Diagnosed - Diet?

[RR2020]

Hi,

I have just been diagnosed with peritoneum endometriosis 3 weeks ago after being told I have IBS after 8 years. :/

My gynaecologist has advised I stay off gluten, dairy, processed food but to also take vitamin B6, vitamin D and DIM.

Has anyone else felt a change in diet and supplements have helped their endo symptoms or am I restricting my diet too much?

Also if my gynaecologist has advised these supplements and diet changes is it possible to receive these supplements and gluten/dairy free food on the NHS? It can get very expensive.

Thank you in advance for any advice x

[Prettythings1]

I am still waiting for a diagnosis but my GP suggested I looked into changing my diet zi am on Week 5 it has been a long 5 weeks cutting out gluten, dairy, cutting down on red meat Caffeine and alcohol also trying to eat more fish etc

I feel healthier but so far no improvement pain wise I’m not sure if it’s too early to tell. Did your gynaecologist indicate how long it takes for for the changes in diet take affect? Xx

[RR2020 in reply to Prettythings1]

Thank you so much for your reply.

Aww I hope you get to the bottom of your symptoms soon. I have not been having gluten/dairy for a few years as it triggered symptoms. My gynae managed to remove all the endo via laparoscopy. I was told to stay off it to prevent my symptoms getting worse and the endo returning. However I know the link between diet and endometriosis is quite controversial?

[Prettythings1 in reply to RR2020]

Ah thanks so you gain more benefit with a lap to remove the Endo

My referral is on a 6 month waiting list apparently

Zi am going to try and stick with the diet best I can I may have to have to odd pizza with real cheese cheese because I am not a fan of vegan cheese and I miss pizza!!!!!!?

[TennisAM in reply to Prettythings1]

I started eating a lot of the gluten free products on the market but then realised they are overpriced c**p. They're made of rice, maize etc so not particularly healthy. I'd advise cooking fresh foods as much as possible rather than relying on these. Doing this has made me feel healthier as I've introduced more veg into my diet and it costs less than buying a tiny loaf etc, that tastes terrible and is unhealthy for £3.

Get the vitamins from cheap places like Wilkinson. Sometimes they're as cheap as £1.5 per bottle. Superdrug do cheap vitamins too and generally have 3 for 2. The NHS won't provide them as far as I'm aware.

I think once you feel better off them you could try reintroducing small amounts. For example try one peice of toast, wait a day then try a small amount of cheese. Must be in a controlled way like this to know what caused an increase in symptoms. You'll find out what you can tolerate. Good luck x

[Prettythings1 in reply to TennisAM]

Thanks that’s very helpful it is all very expensive isn’t it the only thing I have struggled with is the vegan cheese Tbh as I don like the taste

I have basically be living off jacket potatoes and salads haha!!!!

[TennisAM in reply to Prettythings1]

Yeah I know what you mean! I stopped bothering with the vegan cheese because only the expensive stuff tastes good.

If you send me a DM I can send you some info from my dietician. Might help you.x

[Prettythings1 in reply to TennisAM]

Yes that would be very helpful thank you.I am trying to spur myself to keep going as I have been doing this 5 week and haven’t seen an improvement in pain yet only less pennies in the bank

Cutting out milk in my tea has been hard but it’s actually improved awful eczema that is ave totally unrelated but that’s a plus!

[Noideawhattochoose in reply to Prettythings1]

Gluten has been the big one for me, it's made a huge difference.

I'm trying with dairy, but now and then I give in, and it's not immediately terrible.

I have tried giving up coffee, switched to tea, but I sometimes have one.

I am attempting to follow a diet called the wahls protocol. The recipe book is useful, lots of quick easy ideas. It's basically a staged approach to a more paleo style diet.

I feel much better for it, but obviously the endo pain is still there. I'm hoping after a full excision and the removal of my uterus (I have adenomyosis and complete family, still torn over the decision, but here we are) that this way of eating will stop it coming back.

All I can suggest is eating naturally gluten/dairy free foods. Substitute style foods are expensive, disappointing, and not nutritionally wonderful.

[Livingdeadgirl]

Hey!

I have bowel adhesions and I usually limit the amount of food I eat at a time or I suffer. I found just eating healthier in general helped, I'm already lactose intolerant because it M.E. so I co tinued with soya etc. I have found that aloe vera juice supplement from Holland and Barrett works wonders for my bloating and makes me feel much better, but I don't take anything else.

[Brambledoggy]

There are quite a few books available on Amazon called endometriosis diets, how to heal through nutrition. Or similar. I notice every time I stick to these strict diets for a few months my symptoms are never as bad and when I revert back, my symptoms flare up as bad as ever. It’s a total lifestyle overhaul, but I believe worth every effort. Good luck.

[Anastasia17]

Hi. I have found that since I put myself on an exclusion anti inflammatory diet since May 2019, it really reduced the flare ups, the pain and the bloating, diarrhoea. More than a diet, it is a tool. Because I react to all these food groups, I removed: gluten, dairy, soya, chocolate (contains both milk and soya), caffeine, brown rice, apple/juice, tomato purée. I have vegan chocolate, decaf coffee, coconut milk, sweet potatoes, potatoes, rice, quinoa, vegs, salad, gluten free bread, cakes, flour. Often, ladies also remove red meat, I didn’t due to anaemia and because I don’t appear to react. I also supplement with a good quality vitamin D, magnesium glycenate (best absorption rate and gentler on the stomach), evening primrose, zinc, iron (anaemia).Even after recent excision surgery, although a bit less sensitive, I know that if I went fully on normal diet, the pain &co return, as whenever I try to have some normal food (straying from the golden path as being human) my stomach starts doing kinda somersaults😟 .

The positive side of it is having a flat stomach, feeling healthier, more energy, less pain, although the gluten free bread is more expensive, at least I don’t get these burning types of pain accompanied by anxiety, low moods, tiredness.

It is a balancing act for all of us to find what works for us and what makes us feel better, pain free.

Hope you find what works best for you. x

[RR2020]

Thank you so much for everyones reply. Glad to hear a change in diet has been helping everyone. For now I will be sticking to a dairy and gluten free diet as would hate for the symptoms to come rushing back.