Feeling v sorry for myself!!

[Emma19]

In bed feeling v sorry for myself! Have no energy, I’m sore and just feel down! I’ve had to cancel on so many friends lately it’s so upsetting, I’m worried I will be left with no friends! I just feel so alone at times, like no one really understands!! I hate to moan, normally I just get on with it but for some reason it’s really getting me down! X

[Swats]

Hi Emma, I’m so sorry to hear that. Just remember your not on your own and we are all going through this too. I’m currently off work sick. I didn’t make the xmas parties this wkend either so totally get where you are coming from. Going through this has definitely been a test for friendships and which people have really been a big support for me. Some friends have been amazing and others have disappeared as they don’t understand. I’m back at the hospital 2moro and hoping I get some answers and a date for opp. Have you had an opp as yet?

Keep on smiling things will get better 😊 xxx

[Emma19 in reply to Swats]

Hey huni,

Thanks so much for replying. I’m so sorry to hear you are suffering too! Sending a massive hug! Are u off due to the pain or tiredness too? I’m not long back at work after a couple of months off.

I had a lap a few years ago but it was under surgeons as it was the usual ‘suspected appendix’ malarkey!! They said I had retrograde menstuation.

Anyway, the gyne consultant said they probably didn’t know what they were looking for and probably didn’t look for endo so I’m now waiting on my lap appointment coming through from gyne this time!

Have u had a lap before or is this your first?

It’s such a horrible thing to go through, I’m v grateful to have found this chat :).

Xx

[Swats in reply to Emma19]

Hi,

Yes I’ve been so tired as not sleep and bad stomach cramps. I’ve now discovered camomile tea and that helped me sleep a little better last nite. No lap as yet. I know I’ve got 2 surgeons for mine as it’s spread to my bowel. Really hope he gives me a date tomorrow. I’ve got a list of questions for him so I hope he is ready 🙈. Really hope you feel better soon and hope your friends realise what your going through and can cheer you up. Like zunali said we here too xx

[Emma19 in reply to Swats]

Aw I hope u get a date tomorrow! Have u had scans that showed it spread to your bowel? That’s awful, poor u!

Thanks again

Xx

[Swats in reply to Emma19]

Yes had lots of tests over the years, CT scans didn’t pick it up. The only ones that have picked it up was the MRI scan and the Colonoscopy which has made my symptoms worse 😂. I think it aggravated it more. Hope you feel better soon too xxx

[Popetta in reply to Swats]

Good luck with hospital appointment.

I've found through this trying period you really find out who your real friends are = those that stick with you regardless (even if there some things beyond their comprehension).

Sending hugs xx

[Emma19 in reply to Popetta]

Thank u so much! You’re right! Xx

[Hidden]

I’ve had health problems since I was 15 and lost many friends through the years because they thought I was lying about being sick. It is very upsetting. But I have a few good friends that stuck around.

I know it feels like you’re alone in this but we all understand how you feel here. Don’t worry about “moaning” about it, it is good to vent! Sorry you’re feeling so low.

Feel feee to send me a message anytime if you need someone to talk to x

[Emma19 in reply to Hidden]

Thank you, that’s really kind!

I was exactly the same, friends thought I was just making up excuses not to go out and would think I was lying! It’s very hard for people to understand when not in your situation!

Sorry to hear you’ve experienced that too!

This forum is a god send!

Xx

[pixie95]

Hi, your definitely not alone. And it is a hard thing for others who do not have it to understand... but then this is where you know who your true friends are. I’ve lived with this on and off since I was about 13, I’m now 22. I say your aloud to feel sorry for yourself! It’s not easy to deal with! Having no energy doesn’t help, but once you have a bit of energy, you will at least feel a bit more like yourself. But always remember that your not on your own x

[Emma19 in reply to pixie95]

Thanks so much! I broke down in tears last night when my fiancé got home, just having him to hold me made me feel a bit better. I went to see my gp today who’s changed my medication slightly!

I think it’s the never ending tiredness and pain that gets me (and I’m sure mostly everyone) the most! It never ends and it just gets too much sometimes!

I’m the same, had this since I was 17/18 and I’m now almost 30, every year also gets worse!

Thank u for messaging. Really means a lot! Xx

[JOSANDY40]

The problem with people is they don't like illness. They like fun. They won't generally wish to talk about illness. You need fun too but to do that you have to change the way you see yourself. The first thing that really helped was smiling in the mirror at yourself. That does sound a bit odd, a stupid? Well falsing huge smiles tells the brain that the brain is wrong with how you feel. Stand there for a few minutes, big smiles, hold them 5 seconds each, Tell yourself your in control. Have a bath, put some clothes on. Get cosy, bottles, wheat bag, your cup of Tea. Moaning, crying is negative. If you haven't slept, sleep but don't stay in bed longer than you have to. Some how you have to create coping mechanisms. The 1 with the huge smile exercises does work and you need to do this regularly in the day when you're down. When you smile endorphins are release. If I can , you can. I feel sorry myself sometimes, you can do this. We all have got the badge of Endo. Take care J x

[Emma19 in reply to JOSANDY40]

That’s amazing, thank u! Since reading your reply, I went out, got my prescription, ‘treated’ myself to a new shower gel, deodorant etc! I will try the smiling thing too, thank u...really appreciate your reply!!💞xx

[JOSANDY40 in reply to Emma19]

Good for u. Enjoy loving yourself. Remember you deserve to put yourself first. I'm pleased you have seem the strength you have. It is hard but you are in charge not the disease. The brain has a lot to answer for! xxx

[Emma19 in reply to JOSANDY40]

Thank u! Yes it sure does, I used to be such a positive person, it’s slowly been drained out of me but all is not lost...there is still hope and I try each day not to be doom and gloom! Xxx

[Husky47]

I'm sorry to hear you're suffering. You're definitely not alone. I have 2 friends I turn to and only one of them sort of gets it cos she is bed bound a lot herself. The other says she does but changes the subject if I try talk about it. You're not alone and venting is important, as all of this feels so isolating and frustrating and you're feelings are normal. If you ever need to chat you can pop me a message. I'm 22 and had this since I was 15 and waiting for my op to look for endo or intisitial cystitis. Big hugs for you and hope you feel better soon xxx

[Emma19 in reply to Husky47]

Thanks for ur reply huni, appreciate it. I’m sorry to hear you’re struggling with this too! What upsets me is that diagnosis takes so long! We’ve all been suffering this from so long, at the stage of finally getting a lap we are all just so desperate for answers! I’m lucky to have friends and family around me but I have lost a few friends through this too!

Love and hugs xx

[shezza15]

Im sure you have had the best advice already from everyone here, and there right your defo not alone, like many of you iv also suffered for years an also feel alone sometimes as friends cannot understand what this is doing to me, ì dont want any of this but have no control an the people who i think can help take such along time in doin so, one test after another and still nothing, almost feels like im makin it up, the pain, the tiredness, the mood swings the not nowing whats going on and why, all drive you mad an then not to have suport from friends either is all upsetting, some days its easier to stay in bed than to have to explain what your feeling, an on going roller coaster, for for many of us hopefully one day it will come to a stop and we can try to rebuild our lives and start to have fun again, being positive is the only way forward, but please dont ever think your alone, cus huni, we are all here with you.

[Emma19 in reply to shezza15]

Hi huni, thank you for replying.

I’m so sorry to hear you are suffering too. I hear you- it’s the not knowing and yes, u feel like it’s all in your head because bloods, scans etc come back ‘normal’. The way some doctors speak to u in hospital never helps! None of us want the pain, tiredness, mood swings etc so why would we make it up?

Lately I’ve really been struggling with mood swings , feeling angry and moody all the time!!!! I never used to be like that, I was always a happy go lucky person! It’s awful what it does to you but I also refuse to let it beat me and have taken on all the advice from this chat!

To know you are not alone really does give you comfort though it saddens me that their is so many people out there suffering!

Xxx