I don't know who I am anymore.. - Endometriosis UK

Endometriosis UK

61,676 members48,152 posts

I don't know who I am anymore..

BetBet94 profile image

It sounds daft. Maybe I'm alone in feeling like this but I don't recognize myself. I don't really feel like I have a personality anymore I'm just a mix of depression and anxiety in human form. I'm a bloody wreck - emotionally and mentally drained. Yet another appointment down and everyone says 'its positive,at least they're doing something'. Why can't I see that as positive? Surely positive would be being healthy and requiring no additional support. 1 lap and a surgery and a camera in my bowel being arranged. Am I just negative? Is this positive. I'm 22 and this stupid disease is killing my identity and a chance at a normal life. I can't help but feel guilty for the stress it's putting on my partner and family. I'm lost. A stranger to myself. My family say I've changed, my partner is struggling with my moods and I can't control my own body and emotions. Help?

13 Replies

you're not alone. Sending hugs x

Oh bless you hunny reading your post is like hearing my own thoughts, your story is extremely similar to my own, just know you are not alone and its seems like this site has so many amazing women on it that can offer advise, support and understanding. I wish I could say your gonna feel better real soon but in truth I don't know it's best to just take one day at a time and know you have support, a listening ear and a real understanding.

I think it's normal for you not to feel "positive" about having an illness that requires you have surgery and is really affecting your life. Sometimes people think they're being helpful by pointing out the "positives," but actually it comes across as just criticism for feeling bad. I think your feelings make sense and I'm sorry you're going through such a hard time.

BetBet94 profile image
BetBet94 in reply to CP17

Yes, it's difficult because I vomit most days, and permanently feel like I have a water infection. It's just hard to see the positives at the moment. Thank you for the support :)


I can assure you I know how you feel kiddo.

I am in Australia and went to have a lap for another reason and came out with endo removed by excision on Bowel, Bladder and Back of Uterus-got it all for the time being.

Im 11 weeks post op and I have gone through the range of emotions that you are experiencing.

Scared, feeling useless, in pain and fearful of the future.

I questioned whether I had the fortitude to do this again if I had to-Im 42 so awhile to go until menopause-feels like a race against the clock.

Watching every symptom will it come back...

That loss of control of your life is what you are feeling and that comes with any reality check such as this.

But I can assure you after much soul searching, I cannot have regrets about it being discovered.

It could have been so much worse if I ignored these symptoms and for you I would say never ignore the signs as you need to protect your fertility at all costs.

I had to find that focus again. what makes me tick to get me through whatever comes.

For you I would say find that focus.

Whether it be you want to get this fixed for the time being as the goal is to be able to have children.

Or I what to travel and Im going to go here as soon as Im able.

The best way to handle endo is to aim for the longest symptom free period you can get.

Always be vigilant after this, get regular scans and you will get through.

Kind regards


Please know that your not alone in having these symptoms and feelings! You've literally just described how I was for quite some time (only just coming up form it, fingers crossed I'll keep climbing) It is a really hard disease to live with and it's difficult because unless people have it they can't fully understand and that part is really difficult at times. You will go through really rough patches but just remember you can and will find things that will help. It's takes a lot of trail and error but don't loose hope!

Hi, you really Aren't alone. Unfortunately it all comes hand in hand. i said simular things about myself just last night. I don't recognise myself anymore. In the 6 and a half years of trying to get some progress i feel I've faded away. Have you visited your Dr's to get any help? I've been put on citalopram for anxiety. I know this may sound silly but I've also started meditating with an app on my phone. It's really helping with breathing better and calms me down when I'm really anxious. I now do it every day in the morning and top up during the day as and when. If you do try it persevere as I felt silly at first but when I started to let it work I'm noticing small changes with my mood. I hope this helps and if you ever want to talk feel free to pm. :-) x

BetBet94 profile image
BetBet94 in reply to cakegirl25

Yes. I went to the doctors and I've been on anti depressants and anxiety meds for a while now. Going to try meditation - thanks for the suggestion :)

Awwww Hun, you don't sound daft at all. What is positive about being ill and having to have tests and treatment and your body messed about with left, right and centre! I think that's the point that some people don't get, YES it's positive that your having tests etc to get to the bottom of your health issues but I think it's hard to accept that we have something wrong in the first place. I felt and still feel to some extent (after excision surgery) exactly how u feel. It does change us, we live with pain, problems, hormones and everything endometriosis throws at us everyday and I don't know whether u feel the same but I felt I had to prove how crap I felt to everyone around me, this kills ur self esteem, makes u angry, makes u sad, makes u frustrated and leaves u feeling like u don't know who u are anymore. Im 2 months post op and I'm having counselling to try and get myself back, it's gonna take time but hopefully I'll get there. Ur not alone in feeling like this Hun and hopefully, if u get the right help etc u can start to find urself again. It's a long crap journey but there are some success stories out there, u can be one of them! Here if u need a chat, sending big hugs xxxx

You are not alone. I am 23 and have the same problems, but I've found talking to others in the same position really helped X

BetBet94 profile image
BetBet94 in reply to Kb4023

Yeah, I thought if I could speak to others id feel better. All the support on this post alone makes me feel less alone :)

I feel exactly the same! You are all describing exactly how I a feeling! I feel so angry and upset and not myself anymore. One minute I am happy and the next I am angry and irrational :( I can completely sympathise with you all!

I felt like this for about ten years. I just became the condition I think, I was just an ill person nothing more. The fact that I’d put on weight too I just didn’t see myself as ‘me’ either. If I could change anything looking back I’d try to get out more. I had a vicious circle of not wanting to let people down so I would t make any arrangements and I can see now it made my mood and depression spiral downwards. I hope things improve for you soon. xx

You may also like...