Hello from Essex

[Kerry_R]

Hello everyone, my name is Kerry, I'm a 35 year old mother of one and I work as an English teacher at a college.

I was diagnosed with endometriosis 7 years ago after having an operation to remove a lump from my C-section scar.

Since then I have been having Depo injections which means that I no longer have the pain that I used to have around my time of the month. However, I am still left with discomfort, tiredness, back pain (if I stand still too long), pain during/after sex and terrible skin.

After having enough of having painful spots always appearing in my chin, jawline and neck, I decided to try and change my diet. I've given up caffeine, cut down on alcohol (not that I drank much anyway) and cut out dairy. I'm finding dairy the hardest and silly things always annoy me, for example, my daughter and I love going out for afternoon tea but I will no longer be able to do that. I know it's stupid but I can't help it. I guess I just hate that I'm forced to give things up because my body is 'defective'.

I don't really have anyone to talk to about this. My family know I have endo but they don't take it seriously. Because I don't tell them everything about the pain I have, they think I'm alright and just being silly. My partner does try his best to be supportive and suggested that I try to seek advice from other women who know what I'm going through... so here I am. Ready to talk but also ready to listen.

[LouLou2014]

Kerry - I so feel your pain. I was mis-diagnosed for 25 years. I tried so many diets!! You could have a look at the AIP (Autoimmune Paleo Protocol) - there's a lovely woman who has a website - aiplifestyle.com who explains the whole idea really well.

When you read about it - you might find that you find it far too restrictive - however, I had some real fun with it and felt so much better. Waitrose do an organic full fat coconut milk that if you whizz up with ripe mango can make a good subsitute for double cream... not for cooking though. I made a basic "Pumpkin bar" - a recipe from that site I mention above - and dunk that in the coconut milk/mango mix. It's re-learning cooking - but it's a fair approximation of a cream tea!

I have severe deep endo on my bowel and nothing helps any more - I'm due surgery in the autumn - but who knows what that will achieve. The AIP diet helps with bowel transition (I'm on northisterone to stop my periods but I'm still in a lot of pain/discomfort) - I would also recommend drinking buckets and buckets of water!

Good luck with it - diary free doesn't have to be too horrible - I would advise coconut based products - tesco do a cheap coconut oil - it's quite solid - but you can cook with it (like butter) or spread it like butter - don't get drawn in too much by "oragnic" versions that want to charge you £15 for 400g - coconut flour is also amazing if you go grain free too - dense - and takes a bit of getting used to! If you go for coconut milk - try to go for a more expensive organic one - the cheaper ones have lots of thinners and thickeners and aren't very good for you. The waitrose one in the blue can is my favorite!

[Kerry_R in reply to LouLou2014]

Thank you so much for the advice.

I'm in the 'it's so unfair' stage at the moment but I know I need to suck it up and get on with it so some of these ideas are great.

My family are not on board yet, they think going dairy-free is just a fad. Luckily my other half has been really good about it and spent ages in the shops looking at ingredients to keep me dairy free

[LouLou2014 in reply to Kerry_R]

My pleasure! I'm in a similar situation myself - I have just turned 39 and met my boyfriend in Oct last year. I started having insufferable pain in March, he moved in to help look after me. I was formally diagnosed in April - 25 years after my first trip to the Dr about it.

My "it's so unfair" is about having a baby - before meeting my man I was single for 10 years - all through my 30s I just never clicked with anyone - I'm thrilled that I have him - he was worth waiting for. Now I find that my tubes are effed, my insides are stuck together and I have three really big endometriomas - babies... well.. they're unlikely. My health authority only funds IVF to the age of 40 - meaning that I have to be rushed through surgery and rush my relationship if I want to be a Mum - which I'm not even sure I do... it's like legislation is planning my family for me...

It was MUCH easier to eat a restricted diet when I lived alone - people are very selfish when it comes to food... until Dec 2015 I hadn't had bread in my house since 2010 and was made to feel like a weirdo for not having milk in the fridge (what do you do with tea???!).

I'm huge at the moment - when I found out it was endo and not coeliac I binged for about 3 months - now the northisterone is making it hard to loose weight. IT'S SO UNFAIR!!!!

Honestly - coconut milk isn't so bad... I rather prefer it now...

[crossrabbit in reply to LouLou2014]

I used to feel the same about dairy (especially the milk in tea thing!) when I gave it up years ago and replaced with soy milk - now I find the taste of milk disgusting and soy milk seems the natural thing to have in tea!

A lot of the things we think we enjoy and feel miserable without are probably just habits more than anything...

[LauRAa-1]

I've never drank milk because I was allergic as a baby with perseverance and little tastes my parents got me able to eat a small amount, funsize chocolate, that kind of thing but then as an adult the sickness came back and so I had to cut it out. Yep people don't get it even though it makes me physically sick people would put milk in my drink and say oh just have it a bit of milk will do you good lol. Now I'm on a low fodmap diet by suggestion of my dietitian and that's just proving a nightmare. Agreed if you live alone it would be easier lol I'm always saying that would be the case. And I dont like cow milk, soya milk seems normal to me lol well I suppose it is having had it since a baby. Once you've detoxed it all out you nmight be ok to try the odd bit like once every few months have a cream tea. I'm also ok with small amounts of goats cheese, Buffalo mozzarella and sheeps milk feta, but too much xx

[PaulaSs]

Hi, I've just bought The Period repair manual book that talks about the benefits of cutting sugar, wheat and dairy. In it though it says that there a few 'dairy' things you can have. It suggests the problem is with A1 dairy that has casein in. You can apparently have goat and sheep products as well as heavy cream and some butter as these have less casein. I've been having goats milk in my tea this week and it tastes the same. X