How to explain what endo is and how it affects me to people who dont understand

How do I (or how did you) explain when endo is and how it affects you, to people who just dont get it and can only relate it to period pains, or see it as an excuse to get out of something.

I cant show them materials about endo as the info is pretty full on and I dont want everyone being aware of the intimate problems, or shocked by the taboo parts. I just want a way to say how I feel and have the other person have some sort of context about it.

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  • Hi Scara :)

    It depends who you're talking about, I think, and how the endo affects your relationships with those people

    When it comes to family and close friends, I don't think there's anything wrong with giving them something to read. People are going to start thinking I have shares in this book (I don't!!) but there is a whole chapter in Endometriosis For Dummies just for friends and family which explains it all brilliantly, without going into too much technical jargon. It covers all of the symptoms and how they affect you and explains exactly why it's so much more than just monthly cramps

    Employers obviously need to know how it's going to affect your working patterns. Endometriosis UK have a brilliant leaflet just for employers which you can find here - endometriosis-uk.org/downlo... (if the board takes the link out, google "endometriosis leaflet for employers")

    But I suspect you're thinking more about general acquaintances for whom neither of the above is really an option

    First of all - you don't have to justify yourself to anybody. Endometriosis makes us feel bad enough already without us adding guilt to the mix. You know that what you're going through is real

    But for those people who are genuinely interested and concerned - I have to take pethidine for my pain, and have found that explaining to people that my everyday pain can only be controlled with drugs more commonly associated with childbirth works well. I also let them know that I have to go to hospital every six months for ultrasound scans to monitor the progress of the disease. That's another thing, I use the word disease a lot, because that's what it is. That being said, I don't over-egg the pudding, because I don't want people feeling sorry for me, I just want them to understand that this is a proper 'thing', not just a monthly problem that everybody has. And I explain that I have good days and bad days, but no way of controlling which day will be which, which makes planning anything practically impossible, which is really frustrating for me.

    It's sad that we still find ourselves in positions where we are bent double in agony and still made to feel like we're just making excuses :( My mum used to get really....it was more than irritated, she used to get angry with me when I pulled out of family events at the last minute. So I started taking her to my gynae appointments and letting her sit in and hear exactly what the gynae was saying. It was really galling that she absorbed the exact same things then that she had been hearing me say for years andn dismissing, but at the same time, she now understands that when I say I've got "a bit of a tummy ache" I'm not setting out to deliberately sabotage plans, or draw attention to myself.

    Blimey, I've really rambled on. I hope some of it has been helpful!

    C xxx

  • vimeo.com/20910143 I found this video in the endometriosis foundation of America website. It has been very helpful.

  • thanks for the video ....i have posted it on my facebook :)

  • Chrissie66 - you make so much sense, my family do understand what i'm going through, but there are others who haven't a clue.

    I have no diagnosis yet, but with all my symptoms and now the fact they have found cysts on my ovaries, they do not know what type of cysts but they mentioned endometriomas or chocolate cysts?

    but all that aside, i am a mobile hairdresser, i have gone from being a salon owner and working a 60 hour week, to now being a mobile hairdresser who was working 5-6 days a week, with a really successful business until all this kicked in, and now i'm reduced to a 2-3 day week, but at only 3-4 hrs per day, it's all i can manage and still be able to drive myself home.

    my customers think i 'just have TOTM problems' they dont realise that if they refuse to wash their own hair over the bath that by me doing it causes me so much pain, and that when i leave their house i can barely walk. it presents so many problems for me, and i think if i was employed i would've gone long term sick by now.

    i have thought about trying to claim ESA but i have heard that endometriosis is recongnised as a reason not to work, as they do medicals that test if you can lift your arm above your head, and if you can use a pen and a computer mouse!!! yes i can do all those things, even whilst writhing in agonies with my pelvic pain.

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