Endometriosis UK
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Recovery is so lonely

Does anyone else feel so lonely at times with this awful disease? I've been recovering from excision surgery, but I've never felt so alone, it's completely normal everyone else's life's go on but it's so hard being stuck at home (I've had 2 infections making me feel pretty rough) with no choice. I don't feel like anyone truly gets it, I've remained quite positive the whole time but last night I got so upset and have done today as well. I haven't seen 1 friend or barely heard from 1 of them. Makes it all feel a little lonely

Sorry for the moan xx

7 Replies

It doesn't matter how much of a positive person you are this is bound to make you feel down its quite natural. I have lived with endometriosis for many years and have been off work and unwell for a few weeks. I like you try to stay upbeat but sometimes it all gets too much. I'm sure if your friends knew how you were feeling they would be there in a heartbeat.Just let them know how nice it would be to catch up. Remember there is always someone to moan to,rant at etc here. Xxx stay strong 😊

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I also have days where i feel so so lonely in this whole process- like nobody in the world could possibly understand how i feel. This site has really helped me to feel like im not alone and people genuinely do care.

I hope you have a speedy recovery and are back to your normal self soon- You're not alone, if you want a chat PM me anytime. :)

Thinking of you hun. :) xx


Aww thank you, some days always seem worse than others done they I love coming to this place and the groups on Facebook you definitely feel less alone.

Thank you that's really nice of you xx


Definitely feel like this at the moment. I feel quite isolated as no one that I know well has endometriosis. The amount of cancelled plans over the years due to endo related things can get me down when I think about it. I don't want my friends to think I'm unreliable.

Just nearly at the end of my second week off work recovering from my third lap. I've not had a good day today either, I did a little bit of vacuuming and picking a few things up off of the floor as my husband has been great but I feel so helpless not doing anything and this is the first day I've not had lots of pain so felt up to it. Anyway, I looked down and noticed that my umbilical incision has come open a little and has been bleeding. Just feels like a setback.

It was my birthday last weekend so my initial birthday plans with friends never happened. I was in alot of pain so cancelled the meal with my husband thus week too. Luckily, he's so understanding but I feel like such a burden on him sometimes. Last week, my friends invited me out for tonight but I said no as I knew I wouldn't be up to it. Glad I said no originally as I'd have to be cancelling on them once again with this bleeding incision. I did open up to one of them last week and said I felt so unreliable but she reassured me and they all just want me to recover from this lap.

That's why this site is great, it makes me feel like I'm not as alone as I think and others are going through similar situations like me.

Take care xx


It's so hard to keep to plans, I've made them so often and had to cancel it makes you feel unreliable. I think recovery is so hard and you're so desperate to be able to get on and do things and have some sort of normality back.

Endo is good at ruling most days but your birthday is rubbish it ruined mine too as I spent it in hospital catheterised.

I hope recovery goes well for you and you're back to doing what you can in no time, will be lovely for us to get some life back lol xxx


Aww Kirstie I'm so sorry you are feeling this way I too have days like these it can feel very lonely especially feeling like no one gets it or fully understands! This site is really good and feel free to dm me anytime :) try and stay positive we are all on here to support each other xxxxx


I empathise too as felt very lonely at times as it's relentless for me but my friends and family don't get it and only think of it very so often. And rarely get in touch - even a text or email would be nice. Keep chatting here and is also recommend endo revisited uk on Facebook as plenty of people that understand there.


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