I just need to be open and honest about how my life has been recently and I feel like this is the safest place for me to do that.
My endometriosis has had me feeling absolutely exhausted, bloated and in pain and I have hardly been going to work since the new year. I work as a supply nursery nurse, three days a week, as I am at college one day and placement another day (nearly finished my therapeutic counselling diploma). I have had so many absences due to my endometriosis and feeling low and depressed and I am hiding it from my boyfriend (live with), family and friends. I have always felt extremely guilty when I have needed to take days off school or work since being a child and this has become so bad that I am pretending to those close to me that I have been in work when I haven’t.
To add to the inner guilt, anxiety and struggle, I don’t get paid when I am off sick due to being on a zero hours contract. I simply get paid when I work and don’t get paid if I don’t work. So I am living on very little money.
I am starting CBT therapy soon on the NHS and this is my main issue that I want to address: the lying and being able to get up and out of bed on the morning to go to work. On the weeks that I go into work, it makes me feel so much better because I enjoy it and I’m being honest with my loved ones. But on days like today, I feel stupid, anxious, guilty and not good enough.
I lie because I am extremely fearful of people leaving me and of not being good enough for others. I hope that you all don’t think I’m ridiculous. I have just got myself into a silly situation and I’m finding it difficult to get out of.
Hope you are all ok and not in too much pain today xx
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EndoEffect
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I tell the world they ask me they get full on details! Haha the people around you need to understand what your going through, if they don't know they cant help and will probably be more off with you if you lie than saying its because of my chronic health condition .
It's quite difficult at first to explain but I got the endometriosis site up and there is a really good programme on bbc (found on YouTube) about how it effects your life. If I cant make an family event say and I pull out last minute nobody thinks any less of me. (And what kind of person does that make them if they do!)
It's not good to isolate yourself and it's good to tell work, I told mine and they where so helpful unfortunately I had to give up my position but they can put things in place to help you out 😁
I wreckon once you've explained a whole weight will lift off your shoulders I always keep talking about my endometriosis it's a part of me it's in my body with me and everywhere I go.
Thank you so much for your reply. It means so much to me because I felt so alone. I will definitely look at the programme on the bbc about it and maybe ask my family, friends and boyfriend to watch it with me. Work know I have endometriosis but they aren’t very supportive in terms of helping me with it. I should probably ask to put it on my health risk assessment along with my asthma and mental health. Thank you so much for the advice xx
First of all you shouldn't feel guilty about needing time off to look after yourself. I struggle with this daily, but when you're in constant pain and exhausted from just trying to manage it you need to take time off. Your health should come first.
Second, be honest with your boyfriend. You deserve some support. Let him know everything is too much for you right now. Its never easy asking for help but you will feel so much better in your heart.
You shouldn't feel scared to ask for support from those you love. Share with them your health problems, find at least one person in your life to tell what you are going through, daily if it helps.
You are not alone in this world with this condition. We all do what we think is best for other people, but its time to put yourself first.
Wishing you a painfree day.
Feel free to message me if you need someone to vent to or chat.
Thank you MissM! I really appreciate your reply. I really appreciate having this community to talk to where I can be completely transparent and people don’t judge and understand. It means so much to have that space. You are right. I find it really hard to put myself first. Always have. Xx
Honestly I have the same problem with putting myself first, which is why my Endo has gotten to a severe stage before talking to a doctor. Its only been since being unable to work that I've sought help and was diagnosed.
We all just want to go to work, earn money to look after ourselves and our family, pay our bills and do what we want. Noone wants to stay home in bed in agony with nausea!
I've had to find another job with less hours, drive less, rely on my fiance more, and still find every day difficult to get by. All I focus on is finding ways to reduce my pain and stick to my anti-inflammatory diet (as much as poss).
Its difficult, but being part of this forum has helped me so much.
Already bursting in tears reading your post.... no absolutely no way! You should not feel guilty for having a chronic illness! I know it’s hard being at home, I lost my job because of endo, I am actually in bed right now writing to you. I had very tough time 3 years ago explaining everyone including my partner how I was feeling, yes sometimes they might think your are exaggerating or lying about your pain, but once you over that phase in your life you will only care about how you feel and that’s how it should be. Your love ones need to know the negative impact endometriosis has in a woman’s life, also your work needs to know too. I am sure you find it financially difficult as you can’t get sick pay but emotional
side it’s the one to worry about.
In times of agony we do need a helping hand or just someone to be there for us, you should actually feel so proud of yourself for enduring this on your own! How brave you have been! I was also a supply nursery nurse and the job it’s hard! So if you are in pain there is no way you can manage a day at the nursery. Don’t feel guilty believe me the right people the ones you really need will be there for you! But you can’t hide it, you have been so brave! You can do this, there no shame for feeling exhausted our body is fighting endo 24/7 of course your are going to feel exhausted. Also your boyfriend needs to know open up to him, explain what has been happening to you, it will take time an effort until he understands, show him videos about other women experiences, show him this forum where is lots of women going through the same suffering as you, but most important don’t blame yourself this ain’t your fault.
If you need to talk just write there’s lots of us that need comforting.
Thank you so much PaoPetite. Your reply means a lot to me. Work know I suffer with endometriosis and my mental health. They don’t really do much to help though. And you’re right about the nursery day. I need to work full days but an 8am-6pm shift is SO long and I just can’t face it a lot of days.
I will definitely talk to my boyfriend about how it is affecting me and stop hiding it. And my family. I think I need to sit with them and show them videos or something because I don’t trust that they will research it if I’m not there with them.
I watched the guardian video you sent and that gave me comfort. I think I feel worse this morning because we had sex last night. We had sex twice on Saturday too and I had to stay in bed a lot on Sunday. It doesn’t hurt during sex so much, it’s more afterwards that the pain flares up for me. We are open and honest about talking about our sex life together so I will explain that to him too.
I hope you’re well and I’m sorry you have been through the ringer too! It sounds like you’re in a better place now than you were 3 years ago? In terms of putting yourself first xx
Aww love I am so happy you will talk to your boyfriend! You will feel better and if he is a good man he will be supporting you all the way through, it will be hard for him to understand fully but you are the to show him and educate him about Endo ... keep showing him videos if you have Instagram there is a lot of endo warriors you can follow and see their stories.
Yes I am in a better place at least I know I am getting the support I need here in Germany... the doctors are just great!! My pain is being managed and that never happens before 🤷🏻♀️although my first IVF has failed I am gonna have a second round I still have hope!
This is me too! I am currently with talking therapy and she basically says I have dealt with this pain for my whole life the wrong way treating it with disgust and embarrassment. I should embrace it, be self-compassionate and by being honest with myself I will learn to let others in x big hugs! Oh and a good man never leaves xx
Thank you for your reply endo positive. I think you’re right. I’ve had talking therapies before and they have always told me I need to be more self-compassionate. I am getting better at that. I know when I need time to look after myself and don’t push myself. If I were the only person in my life then I would be more understanding of my situation and myself. I think it’s the lack of understanding and judgement and expectations from others and society that crushes me. Xx
First of all, so sorry you're going through all of that. Endometriosis itself is bad enough without the extra stress of financial worries and so on.
Can totally understand you hiding it from those close to you and work. I've done both, I hid mine from a previous boyfriend for almost a year of the relationship as I worried he would leave me. I guess the right people won't leave you for something you can't help, that's all I can say. My current boyfriend knows everything and is so supportive, so people can be supportive about it.
As for the not being good enough part, endometriosis isn't something you can help so you shouldn't blame yourself for it. We tend to have a habit of being kinder to others than to ourselves...
I guess maybe try and have a conversation with these people and explain what's going on. I'm sure they'd probably surprise you and wouldn't be thinking you're not good enough, in my experience it's usually quite the opposite.
Hope you rest up and feel better soon too, endometriosis is absolutely horrific and don't feel guilty for resting and recovering.
youtu.be/LHM3zUoM6q0 i hope this helps and health is more important than work if the work front has no help get in touch with your local MP they are starting to listen also xxx
Hi there! I have just read your post and most of the replies and cannot believe how much I can relate to you and them. I’ve just signed up to this site today as I’ve not really had anyone to relate to about my own endo experience and pain.
I need to point out that it sounds like you’re doing amazing! Putting a brave face on I’m sure (as am I). I am so similar to you - I worked as a teaching assistant and lied many times about being off sick because I didn’t want to have to explain to different people over and over about the pain I was in. Lying in bed in severe pain feeling not good enough to do my job, questioning my life, future and relationships etc. I was so low and down.
I also live with my boyfriend who is as understanding as he can be, but I’d be lying if I said it hasn’t affected us. We moved in together almost instantly after starting our relationship, then a month later I started with the pains. Turns out I have a large cyst on my ovary that was getting bigger causing severe bloating, back pain, stabbing pains, and endometriosis too.
That was just over a year ago and I still haven’t had any treatment or surgery.
I’m genuinely interested to know how you’re getting on now? How long have you suffered? And what are your options?
Also I’m 33 with no kids and we want a family. So worried that it will affect my fertility
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