Why don't people understand?

Why do people think this is in.my head. my family know I have endo, my mum googled itand read there is no cure, but my days if I complain of pain or anything I get called a hipercondriact (can't spell that) like I'm making it up, it annoys me, she read a whole bunch of stuff about it but my whole family think its an attention thing, I wish! If only they knew they pain ect...

rant over :') had to let that out so much.

12 Replies

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  • i hate this, it anoys me so much no one will underdstand unless theve went trew it in my experance

  • I'm sorry to read you're going through this. Unfortunately people just don't understand if they haven't been through it, my family are the same. They don't see what I go through daily, only my husband does. Until I was officially diagnosed my mother was the same and if I mentioned I was in pain, she'd change the subject. Once my MRI showed I had adenomyosis she realised it wasn't all in my head and now she is more sympathetic. My dad's partner's daughter has endo but when she had her lap she only took a few days off and went back to work and she doesn't suffer daily, just during her cycle, so my dad thinks I should be the same. I know it's frustrating and I'm sure a majority of the women on here deal with it too. People just don't understand :(

    Annabel xx

  • Same here until i was diagnosed (it took 9fliooing years!!) hypercondriact was a word floating in my direction alot! And arggghhhh it made me so mad - even a

    Gp i could see in her eyes, as well as a consultant who just dischargrd me! B******ds (sorry im so mad thinking about it not meaning to offend anyone)

    Amyhow it wa the first thing i said to gynae surgeon when i came round after lap & she said im really sorry ive got bad news for you; you have sevwre endo. I was like actually its a releif theres something there, a releif thetes a reason!

    Sending you hugs. Im lucky my husband understands & when he tells me to shut up in jest i do say well i do have a real illness to which he cant say much! Luckily my mum is supportive; esp as lifting stuff is no good & she doesnt bat an eyelid when im popping my pills!

    However im still embarassed to talk about it at work. When im in agony even on cocodomol some days its still agony; i was honest on my work questinnaire & even ticked 'speak to an health advisor' but no one ever contacted me.

    Lately im looking into alternative medicines, natural but wouldnt know where to start but im also thinking of acupuncture next.

    Any thoughts. X

  • Hi

    We have all been through this. I had my 2nd lap 2.5 months ago, deep endo found only in one location and was removed from the root by excision. So the good news? hooray I have no endo anymore....

    BUT... they had to cut some nerves during clearing and the neurological pain is still unreal most of the days. :( Especially at work (working in oil and gas-99% only men there) no one really understands when I say I'm in pain. Today i'm stuck at home since I had a really bad night from pain. I'm about to send an email for my absence and I'm dreading what they are going to think...once again!

    Family and husband are my rock in this, but I have some ignorant people and "friends" saying that I should get on with my life and have a baby instead...Well SORRY if I'm in so much pain that even sex is out of the question, even to try for a baby, and believe me i have better things to do than being in pain, so I wish I could get on with my life as normal....

    Acupuncture can be good, I had a few sessions, first one was great for my pain, in second one my therapist did more powerful session (more needles, pressure etc) and i ended up with more pain :(

    If you are about to start acupuncture find a good one and make sure you start slowly. x

  • Poor thing, i'm in a similar situation with my family except for my husband. They just think i'm moaning and being negative when I say i'm in pain or panicking about the possibility of being infertile (waiting for my first surgery). I guess it is just something we have to put up with. Thank god for support groups!!!

  • hey there cherryington,

    i dont know how long it is since your endo diagnosis, but things do get better with time in terms of the family thing. well at least for me it did. for years my family were like you are describing and it was the most frustrating thing ever. i hardly spoke to them for years because of it. but now they are very supportive. sometimes it just takes time. and also it takes education. its good that your mum googled it and there is defo lots of information out there, but you are the most valuable endo resource, so keep trying to talk to your mum about endo. i try to sandwich it in with other day to day things so that it doesnt seem like i am always being negative (which i regularly feel i am because as you say im always in pain etc). hope things get better for you xxx

  • Hi lm330, I must say its only been nearly 2 month and Iget so annoyed, id hate to have had them been like this for years, I guess its just life. they haven't lived it so they don't get it. The worst thing is my mum has seen me pain for so long now, uI thought after my diagnosis shed get it but her and my sister think because I had some removed I'm okay when intact I feel I've got worse. atleast I'm not the only one who's family don't get it.

    I stumbled across this page last night, and glad I did, to I'm not suffering alone, I can write a rant and so many people understand, thank you :)

  • well any period of time with family not being supportive can seem like a lifetime. i remember days when i felt that i had no one to turn to. even my other half didnt understand (well ex boyf) at all and would get really annoyed at me. i ended up not even tellin my family when i went into hospital for my first operation, and it was only when they kept me in for almost a week afterwards that they rung my family and they were horrified. i think speaking to the medical staff also helped them to understand, but sometimes its hard caus i feel like im going on and on. like so many people on this site say, just asking me how i am. if you want the truth its never goin to be fine. it might be better than usual but still not fine lol. you are definitely right that its so nice to come on here and talk to people. im having a really bad day today with terrible upset tummy (ongoing debate with consultant as to whether my bowel problems are endo related) so i think im going back to bed. a rare luxury but im working from home today, but its either that or sit in the loo :P if you ever need to talk just come on her and vent, there is always someone online :) xxx

  • I'm 34 & when I 1st took my period I was 12 years old my sister is two years younger & because we were so close in age I grew up with the same thing my sis never had as much as a cramp never mind what I was going through & for years I had to live with being told the exact same stuff I was using it to get off school then it was so I didn't have to work it was awful but I'm not sure if anyone else has a better ending Story to tell you but my sister only started to realise how bad I was when we both got older & I was still so much in pain & after so many op's i no one thing it's not nice dealing with the pain also dealing with family or friends not understanding if you ever need to talk theres people here who can listen as I wish this blog had off been there when I was finding it difficult with people understanding xx

  • Don't even get me started! My problems started when I was 12 - awful pain and periods and terrible bowel problems. My mum used to tell me to pull my socks up and get on with it. Even after I was finally diagnosed at 21, things didn't improve - she'd say the problem was that I was spending too much time talking to other endo sufferers on forums which was making me feel ill, and that feeling sorry for myself was making my pain worse. If I thought I wasn't in pain, the pain would go away. Ridiculous. She used to tell me that no-one would ever want to be my friend if I complain all the time and say I'm ill - turns out she was mostly right as I've lost most of my friends over the years, but the friends I do have are real.

    I'm now 30 and things are no better. If she calls and I'm having a bad day, I don't answer because I know she'll upset me. Recently she asked me if I was ignoring her - she thinks I'm angry with her about things that happened in my childhood but really the issue is that she is so unsupportive. She has no idea how difficult my life is on a daily basis and just makes me feel bad for not seeing her or other family members more. She has no idea that I only managed to leave the house twice in January - once because I needed morphine and once because I had to work (that was yesterday and I'm now in a bad state).

    My point is, I used to get really upset that she didn't understand and kept hoping she would change one day. Then I realised - the woman is almost 60, she's not going to change. If she thinks my problem is psychological after seeing me in hospital and knowing the doctors have been prescribing me morphine for 6 years, nothing I say or do will ever change her mind. Now, if she ever asks how things are going, I'll just say "not great" and change the subject. There are people who do understand that I can talk to - I don't need her help with anything. She's my mum and I guess she'll always be a part of my life, but honestly I don't like the way she treats me and I don't need the hassle.

    Your mum might change but I'd say it's unlikely - if she has all the info and still behaves this way, I doubt there's much you can do to make her understand. Try not to let her get to you - you know the truth, you know how much the illness affects you, that's what matters.

    Hugs

    x

  • Thanks everyone, reading these comments have made me think that it doesn't matter they don't get it. other people do understand, and I'm grateful I found this page, cos there's people like me out there that feel same and I'm not alone.

  • No one would understand unless they've felt our pain. I stopped saying to anyone and suffered the pain in silence cause they hadnt a clue. Its the worst pain ever and the pain isnt even describable (spelt wrong lol) just ignore them and get urself well xx

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