I am not sure if this link has been posted before but its worth re-posting for all new members and those that haven't come across it. The website is also a favourite too. Basically, it is a letter we can give out to friends and families either ad-hoc or for when we feel we have to justify ourselves. I love it. I intend to print up a few copies as well as save it book-marked so I can circulate.
Most recently my aunt and cousins (aged 14 and 12) want me to go to Alton Towers in July which is all well and good but they have also brought the ticket to go to a music event on the evening at Alton Towers, on top of that my aunt wants me to drive - 2 hours worth - as she doesn't do strange places. I explained I would have to let her know as I don't think I will be able to cope. She came back with well you did last year.....well no, last year we went just on the rides and my uncle drove, there was no extra partying and I wasn't driving. Last year I was also towards the end of prostap injections so I wasn't suffering as I am now that I am cold turkey on all intervention besides pain relief. She just cant see my reluctance, coming across this will help my explanation to her.....Minor rant over.
That's a great link. The way I see it is that if the endo was covering your skin people would be concerned and understanding. Sadly we deal with excruciating pain that no one can see. I just tell blokes to imagine being tired like you just ran a marathon. Then keep walking another mile but I'm gonna kick you in the balls every few steps!!!
You hit the nail on the head there - with it being invisible it is too often presumed that we are only bad for one day a month, not the fact that we don't get a pain free day each week/month/year. I will remember the marathon analogy I reckon that should paint a pretty damn near picture.
Not to worry about the link, i know it sums everything up for me so my initial reaction was to share it with others. I hope it helps.
i could almost cry reading through all those, because it is almost like people expect you to look like you're dying. everyday when i go out, or to work, i do my hair and make up, because i refuse not to, so because I've done my hair and make up, well i cant be feeling poorly, i must be faking it. because i show pretty much nobody outside of my home the pain i'm in, then it cant be happening, so many people do not realise that my smile is me literally grinning through the pain, and that the pretend to pick my handbag up is me trying to hide the fact that i'm actually in mid flow of a mega stabbing pain.
at least we all understand each other on here, this site is my saviour xx
Well said Y R because this site is my saviour too. I look forward to coming on and reading comments and questions right now it is my only release for the day and I totally agree no one except 2 good friends are interested, (one friend has had endo herself for years) but as far as OH and family and other friends they really are not interested. The letter made me cry, This is such a devastating disease and when I get o just think of the positives, I say there are no positives about it. Sorry for depressing reply.
i'm newly diagnosed, but after being on this site before being diagnosed, i think i knew deep down i had it, my symptoms were so similar to what so many ladies describe on here, but i really hoped it wasn't endo i really did. now i've got my diagnosis and i know why i'm in pain just about every minute of everyday, it would seem to some people, endometriosis is not enough and i get the 'well at least its not cancer' no its not cancer, and i am truly thankful that i do not have cancer, or the 'oh well get that hysterectomy done and you'll be sorted' well thats six million dollar question isnt it? will it sort me out? i know that this condition is not life threatening, but some people need to know, that at times, it can be life changing, and that we are all trying to do our best to live some kind of life. we're not looking for sympathy, but just understanding that we have good and bad days, like many of you, i do not remember a day with no pain, but because we don't mention each and every minute of pain, well we cant be in pain constantly, if i said every time i was pain well, i would be talking about it non stop. i'm facing full hysterectomy and everybody thinks i should just go for it, and then i'll be cured, but i'm giving myself time to think about it before i jump in - sorry for the rant lol xx
YR I agree there are no positives to all of this and its a pity all the people in our lives don't get that either, it is depressing but it is also very true. My first period after my last lap was also late it seems to mix up your body for a few months and then things do start to settle down a bit so hang on in there, first period is so painful. Think my next two were after that then they went back to as normal, as normal they can be. X
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I reckon that should paint a pretty damn near picture. 
14 Year Old Daughter 'unofficially diagnosed' by Gyne - next appointment Thurs - is it too soon for a Lap?
Do I skip my wedding and try for a baby or should I stop panicking?!
Am I right to be angry?
No diagnosis - help!!!
How to get your family to understand!
