Hello I’ve posted about changing my diet to see if it helps obviously the last time I tried it I didn’t stick to it as I am trying again…
Basically I had. Endo confirmed in 2015 via a lap
The symptoms came back after my first child and then even worse symptoms after I had my second 2 years ago
I went to my GP at the beginning of 2020 for a referral to a specialist I am still waiting, I have chased it up so many times to no avail all the doctors do is tell me to be patient or thro stronger pain killers at me which I don’t like taking.
So I am praying diet changes work but I love chocolates and sweet things what do those of you who follow the Endo diet have for treats or snacks please
Xxx
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Prettythings1
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I’d check to see if the gynaecology dept has received the referral. So many times referrals haven’t been received and if yours was the beginning of last year you should have had an appointment through by now. If they haven’t received it go back to GP. I’d use the online form and tell them to do it urgently. I’ve had to chase in the past. Don’t fill it out on an admin form use one the doctor will have to look at. Also insist it goes to an Endo specialist, someone you know is experienced.
I’ve found BSGE means nothing as far as the patient goes.
As for chocolate, I’ve been making my own with cocoa butter, coconut sugar and cocoa powder. Initially I bought a kit off the raw chocolate company, but have bought ingredients from H&B. I add chopped nuts or different flavours such as mint or lactose free milk. It makes a rich dark chocolate (without milk 😂) and you won’t eat much at a time. It’s not a crunch type chocolate, but I haven’t cared.
I know they receive the referral because I got offered an appointment in February I told them I would attend and the next day I had a letter cancelling it because of Covid
And just to wait for another appointmentSo I think they know I exist but I’ve not a clue what’s happening.
Since then I have been to the doctors ask them to chase it up I’ve been told by the doctor that I just need to be patient and wait! I’ve completely run out of patience by now!
If it was me I’d not be waiting and be assuming the hospital have screwed up. You should have been very high on the list. You’ve been more patient than I have been. Your GP is not helping either ( I had a few more choice words about the system but thought best to withhold 🤣)I would call gynae dept and ask why you haven’t heard given you thought you’d have been in the top ten on the list. 😀
Making is a bit more expensive than buying Cadbury but cheaper than buying some of the brands that are free of everything, and if you use nuts/fruit goes a bit further.
I think if that was me I wouldn’t have bitten my tongue, ok, it has been similar and no I didn’t 🤣 maybe your GP can do an urgent re referral, tell them it’s been 18 months and it’s now likely lost in the system.
As people have said, take snotty letter to GP surgery and ask the GP to handle this in your behalf. Keep the original.
Otherwise contact PALS Patient Advice & Liaison Service - they deal with complaints.
I rang up Gynecology at my hospital and the voicemail said there is a 15 month waiting list. So this time lag is the new normal. In no way am I even suggesting you accept this. But noting this fact as significantly bad here!!
I wish you every bit of good health and peace as you continue this journey! Reach out if gets too much please 💗✨💗we are here x x x
Protein is good for sugar levels and I think chromium as a supplement. Really important to keep sugar levels under control. What sort of issues are you getting? I’ve had experience with someone with Diabetes, it’s not easy by any stretch. I’ve started trying pain patches since Friday, early days for those. Still in disagreement with first hospital, second don’t want to help even though MRI showed small bowel loops tethered to pelvic wall 🤷♀️ and I’m trying to find out why. So third time lucky with colorectal surgeon who says he will operate but haven’t heard from him, just over two weeks ago. He was going to speak to gynae as possibly a joint op even though no gynae bits. Sorry, bit long winded 🤦♀️😂
I can only explain it as my sugar levels dip all of a sudden and a blood test showed I have high blood sugars which is why I am being investigated for diabetes. I become extremely fatigued and moody at the same time and can’t seem to think straight. It’s an awful feeling. Have you experienced that? Sorry you haven’t heard back from the doctor since 2 weeks ago, everything takes forever doesn’t it especially when we are waiting x
I don’t have it, but lived with it. The mood swings can be bad to deal with. Don’t forget this is a hormonal condition in a way. The pancreas is part of the endocrine system. If you feel that your sugars are dipping, have something glucose helps quickly. Higher protein/low carb long term. The Diabetes UK site has lots of info and recipes. I’ve seen the worst of side effects, can’t stress how important to avoid them.
Do you monitor your blood sugar levels?
Here if you want to rant about how crap it is as well 🙂
You could try baking with things like honey and different types of jams/marmalades. There are also dairy and vegan friendly chocolates that you can buy in quite small bars. I find this useful.
I’ve been gluten free since April and have seen a big improvement in my endo belly and other related symptoms for what it’s worth. The Mirena coil is only settling down since being fitted in April.
But definitely follow up with your consultants on getting better treatment. It would be helpful if they could compromise with you and give you a rough timescale - that in itself would help you and you would presumably phone them up less.
The majority of the system is messed up and it’s only when you need it and try to access it that you realise it is such a mess.
I use the Alpro chocolate puddings, 4 in a pack for £1.70 from The Co-op, or Morrison’s. I used to use a squeeze chocolate sauce that’s low cal, gluten free and vegan. Got it from Aldi but they’re in Morrison’s on the free From aisle. Morrison’s also do a vegan tub of ice cream for 80p but think it’s got soya in, if that bothers you. The ice cream comes in chocolate, vanilla, or strawberry.
I have never done an Endo diet but don’t do dairy or gluten and cannot face low fodmap aswell.
Since stopping gluten and dairy my Endo bloat has calmed down and so has my bowel.
Hope you find what works for you. This disease is horrible! 🤍🤍🤍🤍🤍🤍💛💛💛💛💛💛💛💛
Energy balls are great for a sweet treat if you are being careful with diet. They are basically dates, nuts and seeds and then you can add in other things to mix them up a bit. They are also a great source of protein to keep you fuller for longer. There are loads of recipes around, but here is one to give you an idea: emmabeltonnutrition.com/dat...
Hi! Im seeing a dietisian for endo and the main thing to focus on is the low fodmap diet. This means you actually are fine to have sugar, she said sugar get absorbed very quickly in the stomach and doesnt cause bloating or pain. The problem is fructose, lactose and a few other fodmaps. So dont try and use honey because that will actually make your symptoms worse!
The same for a lot of fruits like apples and bananas they wont make you feel well.
Check the Monash university fodmap list. They have an amazing app which shows exactly hoe much you are allowed to have.
For example, milk chocolate you are allowed 4 squares and dark chocolate 5 squares.
Thats great! I know they do take ages to schedule the appointment, but it definately will be worth it. I was so overwhelmed by all the different diets before (anti-inflammatory, low estrogen and low histamine, and low fod map) i was just not motivated to try it at all. But she really clarified things which is great.Happy for you, keep at it!!
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