Wish someone would just say, don't worry ... - Endometriosis UK

Endometriosis UK
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Wish someone would just say, don't worry rest up

5 Replies

This is my first ever post...

I'm off work with endo pain and its something I suffer with a fair bit but not as bad a some. I have been to the doctors and discussed options many times, done research and decided unless my symptoms get much worse I won't have surgery. Normally I can just about mange with painkillers and the odd day in bed when I have my period. I suffer with pain, and bowel issues mostly and have around 5-10 days off work sick a year (for all illness not just endo) and I always have.

I was very honest with my new company (7 months in now) when I joined as my last company started to get funny with me about my sick leave after being there quite a few years and getting another illness last year which has thankfully gone. This lead to me leaving last year because I was not treated well.

This is one of the reasons I have chosen not to have surgery as it would mean around two weeks off work and is not always a long term solution. It feels as though people even friends and family don't seem to understand endo is something I live with and cope with, there is no cure and even surgery is no quick fix. I think there is a general lack of understanding as to how dibhlitating it can be and I'm a little sick of explaining myself over and over again.

I suffer with anxiety generally and see a councellor for this but when I am off sick I worry a lot about work and struggle being alone all day. Today I called my best friend and mum and both expressed concern over me being off work again and suggested I go back to the doctor to get even stronger or different pain relief (as if i had not thought of that!!!).

I just wish someone would be wise enough to realise that health and love are the most important things in life. I'm actually hugely focused on my career and have a very good proffesional job but when I am ill I simply can not cope to think about it. I'm genuinely only taking days off when I really am unable to work and do often work in some pain. It is hurtful and unhelpful for them to say this and only fires my anxieties. I wonder if I had another chronic disease if they would say these things.

5 Replies

You are masking the problem my dear. You need to find a good specialist who will help you. Just because your syptoms don't seem as bad as others doesn't mean you should let yourself suffer. Catching Endo sooner rather than later can stop complications later.

I have been self-diagnosing for 15 years and was once offered the surgery but from a specialist I did not like and he made me feel foolish for going to him as it didn't affect me daily. 3 years later I am having worse syptoms and now constantly in and out of Docs for tests unrelated to Endo. I have even asked to see a specialist but he is trying to send me to a different specialist so I'll be contacting the one I want directly I stead as soon as possible.


Don't worry.... Rest up!

I'm being genuine in saying that and not trying to be rude! Honest! I know exactly how you feel and think you are being very brave to carry on going to work and taking only a few days off in exceptional circumstances. I did this for over ten years and my pain got worse and then, due to a separate personal crisis as well on top of endo, it all just became too much and I ended up on long sick leave and eventually left when I thought I had no other option. Once I hit rock bottom, I finally got more help from my doc and started to get some help. I understand that you feel friends and family don't understand as I often think this myself. I know my Mum and friends find it hard and suggest the same 'go back to doc' advice but in essence they are just wanting to help and finding it hard seeing me in pain knowing that they can't DO anything to help themselves.

Anyway, I'd best get back to doing some chores before bed but just wanted to say that your own advice was the best advice... Whether it's you yourself or someone else saying it.... If you need to rest up then do just that! Sometimes our bodies know best x


Hi, it sounds like you need to pick up the phone and talk to support line about how you are feeling! This is new to me and it is a rolo coaster of emotions. regarding your work, you are focused of your career and that is great however one think I have learnt over the years is your health is very important, it is you who has to deal with the pain no matter how syphilitic your collogues are. You can be the luckiest richest person but if you haven't got your health then your future isnt so bright. I kept going to work as I knew everything would change if I didn't but the pain was too much it made that choice for me. If only i had realised I was actually making my condition worse. It takes time to adjust but there is support out there and I know you can do it! waiting for results was the worse I couldn't stop cry-in but now I have had surgery and wait-in to ere of biopsy results. I have moderate depression believe me that doesn't help! The door is open all you have to do is walk through it. And don't for get to breathe, as we forget sometimes! x


Thanks everyone it really helps to speak to others. I did try calling the hotline during the hours it was available but just got the answerphone.

I am very open about my condition with everyone so don't feel I'm masking things intentionally.

I am going to reconsider surgery if I get any worse but I have on old colleague who had it 10 times and really put me off because she was floored for weeks and it didn't set things right for very long. It seemed to take over her life and seemed very drastic. I have had not one but two family members killed by incorrect treatments and surgery which should have been routine (I also have some very good friends who are surgeons) their stories scare me.

I am very anxious aswell as I have had quite unhelpful treatment via the nhs (I won't rant here) but I just don't trust I would be best looked after.


Im so sorry what you are going through. I have endo and it has affected my career and family and friends dont undestand this horrible disease. I have been taking black strap organic mollases with warm almond milk for over a month and i have less pain and its been giving me more energy. I excercise 2-3 times a week and drink fresh watermelon juice with tumeric. I dont take pain killers been doing this for about a month .

I hope you feel better.


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