Things NOT to say to someone with endo!

Adding to the idea from a previous post about a public information advert I would add a list of things NOT to say to someone with endo:

1. Smile, it might never happen -moron I work with has 'up' days where he sings in my face 'smile and the whole world smiles with you'

2. I had a friend that had endo, she had a baby and was cured -who is this mystical 'friend' that I might meet her and learn of her dark magic

3. So endo, it's just bad period pain right?- no no no no no!

4. The only cure is hysterectomy- my first follow-up appointment after my diagnosis a junior Dr said this to me

5. Well at least it's not cancer- yes I know, but when you're in agonising pain (as I was before I was diagnosed) day after day after day, and your quality of life is zilch, this statement doesn't give much comfort

6. I wish I could afford to work part-time- had this AGAIN yesterday

Will prob add some more when I'm not so dog-tired. Feel free to add your own :-)

50mg ami, cerezette, loratadine (for allergies)

45 Replies

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  • I think we need to add a "i know what you mean button to this site"!

    I would like to add...

    7. You don't look as ill as you made out you were.

    8. My GP thought I had it once but I didn't want an operation so I decided to live with it (err as if I want an operation!)

    9. What your in pain now? (how could that be possible look at you).

    10. Try not to dwell on it

    11. Be positive

    12. Have you had your painkillers (in attempt to make you quiet)

    13. You don't know it will effect your fertility, they say that to lots of people and they're fine

    14. Not long now (er to what exactly-my next wave of pain!)

    Feel like there's so many more, but can feel the bitterness errupting!

    Am exhausted too. Was awake for four hours in night after having a nightmare about my upcoming lap - a very unrealistic one but stressful all the same!

    So hoping for you that you can get some rest in this evening.

    Grrrr i'm really feeling mad that these people are being so mean to you. Wish us ladies could all work together...though we would have to have a microwave per desk for our heat bags :) i love that thought :)

    Hope things get more managable soon xxx

  • I'm new to the site but I agree with you. Most people don't understand the pain we have to live with. And because we look "ok" on the outside, they assume we're just being drama queens. Trust me I've heard all the stuff ignorant people say. It took 20 years to get diagnosed. At stage 4, I've had 3 surgeries and a bowel resection. Had to take out some of my colon and rectum and ended up with an ileostomy. Will be having a reversal of my ileostpmy shortly. Endo can really take over your life and the sad part is that nobody understands what we have to endure. Not even family..... It's great to have people like you who are going through a similar experience..... I'm currently on zoladex and tibolone and have put in a stone within a few months. It's a lifelong battle. I wish you all the very best. And remember, you don't owe anyone an explanation!!

  • "You don't have CF, you just don't make any effort" arghhhhhhh

  • 15. Try not to think about it!

  • 16: you were really restless last night love....... I wasn't bloody restless I was in agony!!

  • They say: Mind over matter (yeah right)

    They say:I know someone with endo who manages to work full time (they don't understand the concept that some can have lots of endo with less pain, yet others can have a little and be in agony, depending on what organs are affected and how much scar tissue is involved - this annoys me)

    They say:It won't kill you (oh, so that makes it ok then)

    They say: You look really well (when I am not and in pain)

    They say: Sounds like IBS (even when you have had multiple surgeries for endo and adhesions)

    They say: What have you been eating (ok, food can apparently make a difference in some respects but people often try to simplify what is a serious pelvic condition that can affect the whole abdomen)

    They say: Have a hysterectomy - (even when I tell them the Gp warned me it could worsen the adhesions and may or may not work and is a very difficult and scarey decision)

  • Ignorant people! They have no clue what we have to live with.

  • yes we need that "I know what you mean" button!

    "my friend had laser treatment had a baby and was cured...." at least i'm too old for that now - well actually someone said in the autumn after finding out that my parents had not grandchildren that there was still time; must have been the low lighting.

    It is very similar for other chronic illnesses

    good support group for many peopl is butyoudontlooksick.com on facebook facebook.com/bydls and the wonderful spoon theory

  • Heya, (read the end bit for a giggle) I know what you mean. I have had people say ignorant things to me before which I have found hurtful but I have seen many "things not to say to {insert minority group here}" memes and although they can be amusing and illuminating I have always felt that telling people they are "wrong" for being uninformed can alienate people.

    This can make them less receptive to learning about the condition because if you tell someone off for doing something "wrong" that they didn't know was wrong it gets them defensive instead of curious.

    This makes them less willing to listen to explanations and since we have a condition that many people don't fully understand (and actually one that even we don't entirely get because no one really knows the full reason for endo yet) it is in our interest to try to calmly educate people when they are mistaken.

    I am sure we have all put our feet in our mouths at some point around something someone is going through. I know that when I have done this I have been very grateful when people have gently explained where I went wrong.

    Its kind of like going to dinner with another culture and not realising that passing the bowl to the left is a huge insult to the host.... the host could get angry at the insult and the "ignorant" person or they could calmly explain...

    I try to treat ignorance as a faux pa and I find it makes me less angry.... We are all ignorant in some way... its a lot of hard work educating everyone slowly but I have realised that its just as hard in the long run being angry with people too...

    although if someone does something actually rude like tutting when I am in pain/needing to take painkillers etc then I reserve the right to call them on it.... although if you do it calmly you also maintain the high ground making others more likely to see things from your point of view

    having said that here is my list of things that have been said to me

    1) Didn't find anything... your fine then....

    "oh they didnt find anything in the surgery [hysteroscopy] so thats good... no problem then!" (actually this meant that I needed more surgery and people were being funny with me about the time off thinking I was just making a big deal of period pain..... I explained the situation but they didnt listen and frowned in confusion... but they change their tune when I got diagnosed)

    2) Have a baby... I know about this

    "Just have a baby, that'll cure it!!" (same person said this to me every single time the subject came up and I kept having to explain that that it most likely reduced symptoms for a while but doesnt help a lot of women)

    mostly it bugs me when people don't listen to the explaination but the best one I have had is this:

    3) Its caused by milk.... I know cause I ... know....

    "whats that? endo... never heard of it..... thats definately caused by your drinking milk..... what do you mean I need to justify that with evidence... I just know... milk causes all sorts of problems and this must be one of them.... (i pointed outt hat countries that dont drink milk also have endo in the same amount but their reaction was pretty much "lalalalala i cant hear you".... at this point I ended the conversation.... some people will not be educated....

    god that was long lol

    xx

  • Yes I agree definitely need "I know what you mean" button or even "Yep had this said to me" button

    1. Being told I've spoken to friends who had friends with this and once everything was removed was fine - so you will be fine too (even though I have been told I will never be totally pain free by the consultant!!)

  • My favourite is do you ever have a good day.Er no.

  • Yeh a girl at work said to me the other week - "there's always something wrong with you" no kidding it's not like i have a magic cure.

  • Yep, I've had that said to me too. As well as " why do you keep having all these surgeries? Is it really necessary?" As though anyone will have major surgery for the fun of it!

  • My daughter was told by an

    army colo-rectal surgeon to put on a comedy film and it would take her mind off the pain! He said that's what he told his troops!!!

  • It just shows the level of ignorance out there.

  • My mum to me, after the lady appeared in the papers and on TV:

    "At least you don't have it in your lungs..."

  • I've just re-read that - obviously having it in your lungs is horrible - but I have enough to deal with with it where it already is, thanks mum...

  • Mines has to be "My friend had that and had a hysterectomy and is fine now" oh and the other one..."she was back to work in 2 weeks!" OH REALLY! IS HER BOWEL STUCK TO HER TUBES AND HER OVARIES STUCK TO HER PELVIS???? Er...No i thought not! has she had to suffer the pain and devastation of not being able to have a baby because of this disease? Er...NO, she has 2 kids and can work full time! BLOODY GOOD FOR HER!

    sorry! makes my blood boil though!

    A.xx

  • Had same tubes stuck to bowel/ovaries - you have my sympathy.

  • Thanks Juleyanne, its pretty crap for us all, people should think before they put their tuppence worth in! Take care.xx

  • I'm totally with you.

  • I just laughed sooo hard at work and when I told my colleagues why, they had the decency to blush!

    Thanks for making my Friday ladies :-) xxx

  • -I was told by the consultant just yesterday to learn to relax and my pain would be better...

    I also saw a bowel consultant and he said to me "so your endo is under control"... to which i said,. what does that mean? my last two laps have both found endo, im still in horrific pain daily and they have no idea why i have X Y Z symotoms. does that sound under control to you?

  • p.s. your blog is so funny to read xx

  • Just today at work the lady from HR saw me, and told me "You look fine though"....Grrrr God help me! I replied that I'm in pain and try to hide it every single day though! Ignorant people ppfffff x

  • I got a disciplinary for time off due to 3rd lap

    And ongoing problem with my bowel they need to class

    Endo as a disability as the specialist said I might be in pain for the rest of my. Life :( x

  • the 'I know what you mean button is needed for sure'

    My pet hates that people say to me:

    -You look fine though (you get acustomed to the daily level of pain and try to keep smiling - does not = pain free)

    -Your at work to work so get on woth it like I do

    -Sex can't hurt you're obviously not doing it right

    - I know women that have been told they can't conceive and have children now so don't worry

    - Men will understand (not managed to find one of these yet)

    - Just take some painkillers it will sort everything (I take them daily and it just 'takes the edge off')

    - You're just lazy

    It took 11 years to finally get someone to take me seriously and diagnose me, I literally sat in the clinic and said I'm not going until someone listens. I wish people would take the time to understand more and accommodate.

    I want to work

    I want to be social

    I want a relationship

    I want to exercise (yoga is helpful I have now discovered)

    Seems like a list that should be easy

  • When I first had symptoms I got "it's just period pains and being on the pill for so long has masked how it feels". I knew that wasn't true but you doubt yourself when you get told such things from doctors. He's certainly eaten his words since and is very sympathetic and helpful nowadays so at least something positive happened.

    The worst for me is all the "helpful" tips on how to get pregnant from people who have absolutely no understanding of my situation. Thank goodness for supportive friends and family, and this site!

  • This blog really struck a chord with me.....and I do know how she feels

    It's called "What I should have said."

    livingwithendometriosis.org...

    I have it saved in my favourites. I wish it was shorter and I could print it off and hand it to who ever is giving me grief over endo.

  • My best/worst comment came from my consultant gynecologist who was a woman, this came after being rushed into hospital in excruciating pain and vomiting due to a burst cyst, I had to have open surgery rather than a lap as there was so much blood they couldn't see, I was in hospital for 8 days and told id have a 3 month recovery...........due to the surgery causing extra adhesion's and therefore more pain my recovery ended up being a year instead, anyway 6 months after the surgery while still in extreme pain I went for a check up with the gynae, I told her how much pain I was still in following the operation and that sex really hurt..........................her reply was 'Your a woman you will just have to get on with it'

    I was gobsmacked such a comment would come not only from a gynecologist but a FEMALE Gynecologist...

    I now also have Hypothyroidism, Pernicious anaemia (B12 deficiency), Depression, Rheumatoid artritis, and possible M.E..................all of which dont have visable outside signs (except I have trouble walking with the artritis) but all family think im putting it on and friends think im just lazy because I dont work and are constantly tired....................

    My Brother actually said that if I got a job and got up at normal times like everyone else all my illnesses which are just in my head would all go away..........and there am I wondering why the doctors have me on nearly 10 different tablets a day for imaginary illness........

  • I appreciate your post Crystal. Ladies I support and understand you, but what I'm hearing here is a lot of negativity which doesn't help anyone's situation. I am also battling endo and just recently lost an ovary. I have heard almost all of these comments but I chose to not get mad. We have choices that will benefit our health. Getting so upset over a usually innocent comment adds to stress; something that makes out condition worse. You have to remember most people get misinformation from professionals and that is played like telephone. If a co- worker or friend can see you're in pain of course they may something like "it'll get better" or "I know someone who got better" Remember they are tying to comfort someone they like or care for and just don't have the knowledge to say what we want. Most of these people are on our side. Some of these people love us. Some people are just insensitive A-holes. Lets be careful to not group them together. My husband even attends my endo support meetings to try and "get it". I know there have been times I just didn't know what to say to someone dealing with a problem I knew nothing about.

    I have decided to be positive. I don't feel sorry for myself. I try to stick to te endo diet and I continue to learn more about my endo every day. I'm choosing happiness - that choice is harder some days but I make it. I try hard to not let other people decide what kind of day I'm going to have.

    It will be a wonderful day when out disease is treated with the seriousness it deserves. In the meantime, I do my best to educate others. My hope is that the next time they meet one of my sisters in endo, they don't prescribe pregnancy as if it were medicine. Perhaps doctors should stop first and others would follow. Lets transfer this annoyance away from those who care about us and direct it to the professionals whose job it is to know about endo yet don't even try.

    Stay strong ladies...we'll get there one of these days.

  • I started this blog as a way to let off steam. I am never rude to people who make insenstive or ill-informed comments so instead I write my thoughts down rather than bottle it up. For some people just knowing that someone else is thinking/feeling the exact same thing you are is a positive thing.

    Feelings of anger are part of the course for any serious illness. But it's not the doctors' fault, or your friends or relatives fault that there is a lot of missinformation out there. Doesn't stop you feeling angry though. For me this is a healthy way to let off steam.

  • thank you... I especially like the way you worded this bit

    "Most of these people are on our side. Some of these people love us. Some people are just insensitive A-holes. Lets be careful to not group them together."

  • i think this is great reading all thses comments i must of heard all them comments since been diagnosed ,with endo and ado,, ive just read through them all and i couldnt believe my eyes that its the exact same things thats been said to me , you feel so alone with this condition until people share this sort of infomation with you , then you really do feel that your NOT alone,its not been bitter or angry about what people say to you ,its simply just sharing that you really arnt alone and we have all been through these sayings xx

  • Any publicists out there - I think it would make an excellent booklet to make sufferers laugh and share reactions. Yes, of course some of the things people say to us are at best thoughtless, at worst misguided and unkind. I do however, believe by sharing our experiences we can ultimately feel less alone and less misunderstood and if it makes us smile surely that is a positive thing!

  • I have a few to add....

    - "well it's probably 50% in your head due to you being depressed!" erm....it's the pain that's caused the depression not the other way around moron!

    - "How can you be in pain when you're down the pub?" erm....I'm so utterly drunk to mask the pain and I go out once a month for my karaoke fix!!

    - "How come you can't work? You manage to do housework and look after your kids fine!" erm....I'm in pain constantly or running to the loo, I've lost 3 jobs because of my illness I know I'm not reliable enough for a normal job!!

    - "You never want to do anything, it's so annoying and makes you boring!" erm....thanks you ****** you obviously have no idea what it's like to be in constant pain!!

    - "I thought you had an operation, didn't it work?" erm.....they cut out the endo and found most of my pelvic organs stuck together and diagnosed me with adenomyosis which cannot be cured until Im old enough for a hysterectomy!

    - "you were fine yesterday, do you just not want to see me, have I done something?" erm.....no I have good days, bad days and horrendous days and I never get to choose when this happens!!!

    - "I'm seeing the dr tomorrow to see if they think I've got what you've got. My period pain's got bad!"......next day "Oh, I saw the dr and he said I had trapped wind, got home and did a huge fart!" erm......you have no idea what pain is, quite obviously!!!

    I could go on but it's making me cross!!! xx

  • oh ladies all your comment are quite shocking I understand people don't get endo and what comes with it I can let that slide it dosnt matter but its the people that are close to you around you every day with this god dammed life killing disease and when your really down and trying not to cry or punch something hope that's not just me? and you get "its womans problems" I don't no why but that really bothers me id love to have a normal period take some iburfen and get on with the day but it isn't normal I don't think im special or better in anyway but it isn't just womans problem grrrr sorry my spelling is poor!

    id like to start educating people who wont to know especially our partners if you've got a good guy then great but tell them sorry huni im in pain no sex today and they get annoyed some people need a shake

    tummy love to all you ladies out there xxx

  • This is why I have never ever tried to explain to anyone what this disease is like. I keep it to myself. I don't expect help because i know I won't get it. I have lain on the floor in agony for hours while my beloved husband read his newspaper...he knows what's wrong with me. He just doesn't believe there is anything he can do to help. I used to get angry about it, now I take the painkillers and go to bed. If I am in pain then I keep to myself. If other people don't like it they can lump it...if I can't or don't want to go somewhere then that is bad luck for them. I have learned to look after myself and I find that keeping the details to myself is best for me because most people only use personal information against you. As for the "professionals" in the medical facilities - I would rather see a vet than a doctor most of the time.

  • This made my day (and it is only 10am)! Thank you ladies, it is so nice to not be suffering alone.

    My favourite statement of all time is; "You just need to stress less"!

    Yes this horrific pain and multiple surgeries is all because of stress, thank you so much for your amazing advice, I am cured now!

  • "I know what you mean" too! I have a lady at work who will look at my crotch and say "how is it all, ya know and nod to 'down there' I've now taken to telling the truth not just fine thanks, after telling her about the pain she tends to say "what still, but you were in pain last week" hmmm yes it's not just a one time thing, like this conversation which is repeated EVERY week (I only see her once a week) then she will say so what are they doing about it....I'm waiting for a lap, to which she replies oh I've had one of those there fine, ok thanks for that, then she will say so what is it again endo? I nod knowing what is coming next oh thats not bad it's really common like everyone has it "do you have it?" No but loads of people do it's nothing to worry about its not life threatening. Oh well that's ok then as long as it's common and loads of people have it....One time conversation would be a bit annoyed but every week......

  • if this was as easy as just stressing less i would be cured..like u said ashleyj....the worse one i get is do you feel better yet???....my reply is no i dont i have endo and chronic pelvic pain...i wont be cured... good luck to us all..xx

  • The most laughable things said to me have been:-

    "I can tell by the way you are walking that you're not in much pain" (from a private consultant, so glad I paid £150 to hear that!)

    "anything's possible in medicine" (from the same consultant who couldn't answer any of my questions)

    "Can't you just ignore it?" (from a GP)

    "You can't possible have pain there, there's nothing there that can cause pain (from a physio)

    "You definitely don't have endometriosis" (from a consultant, sure we've all heard that one!)

    I laugh at it now but at the time it's really annoying !!!!

  • We have one misogynistic git at work who constantly comments on women and how they look, and how English women should put more effort into their appearance etc, yes girls, one of them!!! Anyway a trick I have picked up over the years is to paint on the war paint and wear a flowy dress during "them days" because usually if you look ok people don't tend to comment on how you are feeling so much. Right, so I was doing figures one day with HIM during my monthly visit to hell and the pain literally took the wind out of me, he looked genuinely concerned. He asked what it was, are you ok... the usual stuff and I explained I have this thing that effects women. He did "that" face and said "oh christ, you women, you would think you would just get on with it...." and did a big speech on why so few women are CEO's...., I know what your thinking ladies but there is no way I could have got his body out of the building unnoticed and into the boot of my car in my condition, I had considered it. So I listened, I let him finish and I quiet ungracefully said "You asked what was wrong, I answer you, I did not ask for you f*@king opinion, I'm sorry my period causes YOU so much distress" Thankfully I am married to a very kind and thoughtful man and I only have to work with that other thing two days a week.

  • Wow! What an A-hole! It amazes me that there are still so many around. It's people like that make me wish I had a magic wand so I could make them walk in my shoes for 24 hours. They think man-flu is bad! Try having pain so bad it feels like you're being stabbed with burning knives.

  • Absolutely loving this thread ladies! We've all had silly comments made!

    I'm a beauty consultant and I very rarely go out with a naked face so I often get told how well I look and it makes me feel like I'm making the pain up. I thankfully have a strong circle of girl friends with similat issues and we all go out there with our makeup "masks" on regardless of what people may think. Its all about your self respect and how you feel, it doesnt matter what others think.

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