Can anyone help?

[Chloe_lj03]

Hi, I was just wondering I’m stage 4 endo and I’m 19 years old I was diagnosed 3 years ago. Can anyone give any advice as I am struggling to understand and deal with my endo as it’s effecting my life. I’ve had 2 laparoscopy surgeries, and I’m still in as much pain as I was before being diagnosed. I’ve tried the pill and an IUD, hormone injections and I am on cocodamol as well and nothing seems to be working. Is anybody able to give any advice on what I would be able to do regarding lifestyle changes and how to deal with the pain? X

[My_adventures]

Hey

I have stage 4 endo as well, although I'm alot older than you!

I bought a book on the endo diet a very long time ago - about ten years. I've seen people talk about it on here as well I'm sure plenty of websites discuss it.

Trial everything and see what works. I can eat certain foods but only in the morning. Bread, pastry, greasy food is a big no no for me. Unfortunately my love of cake will always win! Plenty of fibre and fruit and veg and drinking plenty of water.

I find managing my stress really helps, I'm in a very stressful job and I find hiking and wild swimming help me. Try and move everyday even if it's just some yoga or something. Move your body every day even when it's screaming at you that will help with the fatigue.

And lastly be kind to yourself. The stress of this disease, the stress of the NHS when trying to deal with the disease along with general life means we don't always give ourselves time and respect.

I'm sure others will share their experiences and thoughts too.

Good luck xx

[Chloe_lj03 in reply to My_adventures]

Thank you xx

[Lina2]

Hi Chloe, I never done any diets but in terms of managing pain I alternate tablets every 2 hours to get max cover all day while still leaving 4 hours between tablets.

For example

10am nurofen

12pm paracetamol

2pm nurofen (4hrs from last nurofen)

4pm paracetamol (4hrs from last paracetamol) and so on.

At night I substitute the paracetamol for cocodamol as it’s more likely to keep the pain at bay over night. Cocodamol causes constipation which is always worse and more painful during my period I therefore use it only when needed. Sometimes I substitute paracetamol for cocodamol during the day if I am particularly bad (note cocodamol contains paracetamol so you can’t take it together with paracetamol).

A hot water bottle also helps That’s what I do but do check with your pharmacist or gp.

Make sure the pill your gp prescribed is appropriate for you as endo thrives on oestrogen.

Hope things pick up

[Chloe_lj03 in reply to Lina2]

Thank you xx

[EmB18]

Sorry to hear you are in so much pain. I found changing my diet helped with my pain levels, for me it was taking out wheat, sugar, caffeine and alcohol that made a difference. We all have different triggers but it may be worth looking at anti-inflammatory diets to see if that helps you at all.