Endometriosis UK
36,664 members32,441 posts

Freely like nobody understands

I have servere endo and have had 5 laps now. My last lap the surgeon told me all endo had been removed but he hadn't and had put that in my file but lied to me. I am now waiting for an extensive lap where i need my right tube and ovary removed possibly part of my bowel and possibly my left tube to. I am 30 years old i have no children and not sure if i will be able to either. I have lost my job and cant work due to pain and also cant claim any benefits. The hospital have told me 12 months wait for my op during which time my endo will only get worse. I try to be positive and put on a smile and lie to everyone that I'm ok but then when im not everyone is like dont think like that you need to do this that and whatever else. Nobody seems to understand that sometimes you can't phsyically you just can't. Anybody else feel like this hope im not alone x

6 Replies

My sympathies to you.

My endometriosis journey has just begun. As I can't 100% understand what you are going through, I can understand how frustrating it is to even be diagnosed and taken care of in the first place. There's many women here that understand what you are going through.

It's hard to fake it and act like you're okay. I do this often. Everyone's journey is different but please don't feel alone in this. I know it's hard, but you're definitely not alone here x

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Thank you for your lovely reply.

16 years of suffered for since my first period. I don't even know if it's people who don't understand i think it's my head and hormones that are baffled just can't work it out x

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I totally understand that. For me, it's like all of these emotions are happening at once and it would be nice to have some calm rather than chaos. Hormones can make me feel all kinds of "irrational" feelings. It's like I know I shouldn't feel a certain way but I just can't help it!! 😞 I hope yours calm down soon x


Thank you x


My heart goes out to you.

No one empathised with what I was going through except my best friend and another close friend. If anything, I faced a considerable lack of sympathy from most people I knew. They couldn't understand why I could go out one day but be unable to get out of bed on others. It's an invisible illness. The disease isn't understood: not by doctors; not by the public.

It's important that we help people to understand the illness so that women get the empathy and support they need. I think we should say loud and clear how painful it is and raise as much awareness as we can.

I hope you get helped soon. x


Believe me I am stamping my feet with the hospital 12 months wait is unacceptable for a woman wanting a child and already waiting to alot of the fertility equipment removed people dont care i have tried the media think next will be social media

Thank you and wish you all the best



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