Hey, so long story short, I've recently started getting more involved with family again - parents etc. They haven't really known how I've been healthwise for the last 15 years, my hubby has been with me for 10 of those so he knows. I have told them I have endo and they say they know what it is - I suspect my mother and aunties had it but due to the culture no one talks about womens things. Anyway as I've been more open with them; they've only really taked to me after my second lap (july 2018), they won't have seen me when at my worst or during my first lap (nov 2017). The recent trip up they've raised concerns about my health.
How do people respond in terms of letting family know the following?
It's so soon after lap, so I need to recover and get used to my symptoms
It is a lifelong condition and has an impact on other bodily functions
They haven't seen me at my worst my hubby has.
I understand their concerns as they are my parents and want their children to be healthy. But I worry that they don't know the full extent of endo and are just putting it under "womens cycle problems".
I have regular diabetes checks due to endo and grandparents diabetes, but I don't think my parents know that the two are linked. I have regular thyroid checks due to endo and mothers thyroid problems, again I don't think they know the two are linked. I have gained weight and other side effects eg mood swings, skin problems, due to having hormone treatment for 10 years before docs diagnosed endo in nov 17 (when they finally listened) so my parent's haven't seen me. I have possible rosacea so having treatment for that; endo is linked to immune issues. How do I actually get them to understand that I'm not magically going to get better as I still have endo even after the laps?
How do others break them in gently and educate them at the same time? I don't want to just force all the info on them as I feel they are really concerned they just don't have enough knowledge so don't know how to help.
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luthien
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hey, this book helped some of my family..."the doctor will see you now", author Tamar Seckin, M.D. He writes in it a way the whole family including the sufferer understand what you're going through, and why. Seriously, say no words, this book will explain it all to your parents etc.
Written by one of the best endometriosis doctors in the world. Someone who understand every inch of pain you're going through, all written in a book , with ways your family can help and be understanding.
Just shoving a book at them wont help! It's not how these things should be discussed; in person and face to face is best plus more personal. Anyone can read all they want, it's still reading, just like the news, or a good novel, it still just written. But because they care emotionally and see me they need to know from me how things are. I wouldn't go round just telling my friends or my hubby to go read a book lol! I'd talk to them explain it from my view, that's why I'm asking how others have talked about it, personal experience.
In my opinion giving someone a book and telling them to go read it when they've expressed a personal concern isn't a personal response, it would feel cold, and distant, like you don't want to talk to them or tell them. Just my view.
It may work for some people; I get that and perhaps it has for some of yours but all it does I feel is stop them talking about it, which isn't what I want, I want them to be open to ask things so I need help from people with experience of DISCUSSING things!!!
I really feel for you! It's hard work having endo and even harder to explain to people what is going on. I haven't told a lot of my family as I can't be bothered with the intimate questions and gossip mongering! I have only told those who I know who care about me and are genuinely interested. It's embarrassing talking to male family and friends about yourself intimately but weirdly I find them more supportive than females! It's a hard decision for you and I would tempted to only answer what I am asked. Good luck and I hope they support you as much as your husband does xx
See I don't mind the explaining: I think I've got over the embarrassment, I don't see it any differently to any other lifelong health condition, even if it is our intimate areas! I realise though this still isn't how others see it so I want to be careful about what I say and so it doesn't sound like I just talk about that "area" to everyone - then there will be gossip lol!
Most of my family won't ask though; they tend to just make statements like "we're concerned for your health", "are you eating okay?", "you have a fat stomach today", "you seem tired, are you ill?" comments that really don't help, and I want to find a way to explain that these are all symptoms are linked to endo, when I do I have the response from female members of "we all get what you're going through" - really if you did you wouldn't make comments. It frustrates me! I know they want to understand medically what's wrong but I can't explain endo in simple terms - I think it's because they already think they know what I'm going through, so I need to be able to explain that it's different for everyone.
Is there like a leaflet or something for the family of endo sufferers like there is for say diabetes, heart conditions, cancer etc?
Ahhh I see what you mean, I agree there isn't enough support for endo like there is other conditions. I wasn't diagnosed via lap (endo came out of episiotomy scar) and I was sent a letter saying I have perianal endometriosis and that's it! No advice, no what to expect, no next steps, no support group, no leaflet, just nothing and I think sometimes the emotional side can be as bad as the physical. I only know of one other person who has endo (unrelated) and she was heavy and eventually had hysterectomy. A lot of people said well you aren't heavy so how come you have it? Have a hysterectomy it will cure it! Etc and maybe because of the pain I was a bitch and said wow you know more than the Drs! Maybe you can cure me! *Sarcastic cow which I am* I know my message won't have helped your situation but one thing these message boards have taught me that every woman is different, we may have similar symptoms but our ops and outcomes are different! It's hard getting that message across to others! Also good on you talking to family members about your vagina haha xx
Ahh no the lack of support after diagnosis is awful. Luckily I had a really good specialist but I still felt in the dark, like there was no leaflet etc.
Yeah I get the "so you've had your endo removed right? howcome you're still ill?"
I go to polefitness, we talk about everything, I mean everything lol! so it's taught me just to love all parts of our body
Thanks for your help and understanding, perhaps we'll find that information xx
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the lack of support after diagnosis is awful. Luckily I had a really good specialist but I still felt in the dark, like there was no leaflet etc.
Anyone else out there struggling with being single at 40 and stuck with Endo? How will I ever meet someone who will accept me with this?
Acceptance, how do you deal with accepting Endometriosis will rule your life? 
How to cope?
Not endo anymore? 
