Miserable

[Lunaloo123]

I am so tired, I am in agony and I am so miserable.

I hate moaning, I’m not normally one to moan but this condition is getting worse and I can’t cope with not knowing when the operation is going to be.

Is anyone else in the same boat with the waiting list?

My GP is being really helpful trying different things to help me get by but I feel mentally drained and I am finding it hard to be strong.

I’ve been going to work (an office job) and then coming straight home to bed for so long.

I’m going insane.

Can anybody help me?

[Loveneige]

Oh Lunaloo I could have written this myself. I've veen waiting a year now for my op and it is torture not knowing when there will be some light at the end of this tunnel. I'm struggling to work and I only work 18 hrs as it is as its quite physical.

I cant plan anything as I don't know when it will be and also can't do much when in so much pain.

I feel you. I cant offer any help but you are not alone in this.

[Lunaloo123 in reply to Loveneige]

I am so sorry, it’s horrid isn’t it?

It’s great that we have each other but it’s unfair that it’s under these circumstances!

I hope that you get a date soon. X

[fed_up_of_endo]

Some real empathy coming your way from me! Waiting on a referral again and no clue when that'll happen, and then hopefully get in the queue for an excision if they'll allow it. Had to give up my job as I wasn't fit to work. It takes so much from you.

It is so so difficult to deal with this on a daily basis. Physical pain is one, thing, but the mental effects of this are dreadful. I personally find the lack of control over it a big problem too, you are at the mercy of the disease and in the hands of an overburdened undereducated system.

If you are in line for an operation just know that the cogs are moving and you'll be counting down the days soon enough.

Don't be hard on yourself, be kind and rest as you need to.

Also, watch some videos of men using period pain simulators just to remind yourself just how strong you actually are still managing to get up and go to work despite the pain - proud of you for managing that! 💗

[Lunaloo123 in reply to fed_up_of_endo]

You have managed to make me cry! (In a good way)

It is so frustrating to think that you’ve had to give up work because of this. And I can see why you’ve had to.

The videos sound like a very good tool to feel better so thank you for that!

I’m not one for self pity and hate that I have to keep posting on here to be honest but there aren’t many people in my life that understand this.

Thanks for messaging ❤️

[fed_up_of_endo in reply to Lunaloo123]

Oh sweetness, just know you aren't alone!!

It's a difficult one for people to comprehend, there aren't many conditions comparable to this. It's not an excuse for a lack of understanding, but that coupled with the lack of education is a reason I guess.

I read that this is in the top 10 most painful conditions, and with it being so chronic I'd personally bump it up a place or two! I really don't think it is self pity.... more a very valid mix of exhaustion, frustration, hopelessness, pain, fatigue, sadness and many other emotions (it's not a cold you are dealing with!!). You are strong, not that you should have to be, but you are.