Endometriosis UK
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What remarks do people say that annoy you?

Hey ladies!

Hope you're all well!

Bit of a random post I know but I was just thinking... what snide remarks do you get about your symptoms of endo?

A couple of mine are when I was working I would go and fill my water bottle up & people in the canteen would say oh you must be cold sitting in that warm office & laugh, I couldn't be arsed to explain it anymore so just laughed.

When I'm extremely tired and people say, oh you haven't done anything all day!😒🖕

When I talk about my endo to someone and they say their family member has it or they know someone who has it and it's not that bad...

When someone thinks it's just "periods pains"✌😩

When people say well you were fine yesterday. ..

What are some of the snide remarks you've had?

Big hugs xxx

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'Are you sure it's not depression?' I mean they obviously know my body far better than I do.

'Have you tried taking contraceptives?' Er, no never thought of that in the whole 20 years.

'Are you sure you are not just scared of sex?' Ah, next time I peel myself off the ceiling having been ejected there by pain I'll ask myself the question.

'You are being very unfair on your family behaving like this - try and think of them.' Whatever! I'll take back the literature I gave you then, to try and give you knowledge and understanding just in case you might have supported me.

'Oh no, it is so embarrassing having to cancel yet another social event because you won't go.' Of course it's not as if I would rather have a social life instead of this.

In company with other couples - 'sex, what's that?'

We could write a book...

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Oh god people who are so misinformed it's untrue . And putting the blame on the sufferer

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Oh it's just period pain.

How does period pain cause you to be so horrible?

Why are you always in pain? I didn't have to be in pain I wouldn't!!

Why don't you get periods? (I have PCOS too!)

Oh getting pregnant is easy... just relax and it will happen! (Nah!!!! ) xx

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Are you sure it's not in your head?

That's my personal favourite! ;)

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Mine was officially 'supratentorial' and still stands in my medical records.

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Gah

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"If you go out in the sunshine and take a pro-biotic yoghurt that will make you better"

"She has a hot water bottle because she feels the cold"

"But you were fine yesterday"

"You must be feeling better now you have made it out today"

"how can you be tired and feeling unwell after cleaning?"

"if having a hysterectomy will help in some way then don't try have kids and have the op" (always said by people who have had children naturally with no problems)

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Hahaha! The probiotic yoghurt thing really made me chuckle there! I've had that, along with "you're obviously gluten intolerant, just don't eat bread" everyone is a bloody expert!

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After laparoscopy to diagnose, excise endo and adhesions ... "ah so that's you all fixed then, you can move on now that you're all better" ... completely ignorant to the fact it's a chronic condition.

Every time I make a hot water bottle at work "are you on your period again?" Or "I'm not being funny but you always seem to be on your period"

Best mate ... "just stop being so stubborn and have the mirena put in. I'm on it and I'm fine so you will be too"

Best mate ... "Sarah you're so boring, why don't you ever want to come over and have a few drinks? It'll make you feel better if you get p!ssed!"

Colleagues ... "remember when you were happy and funny and used to have decent crack with us all? Now you're just a boring misery with no crack"

Colleagues ... "so what is it then? Just painful periods? Yeah I get painful periods too" (says the woman who once had to take a couple of paracetamol back in 1992 for a particularly bad period!) Try taking a cocktail of several pain killers at once and trying not to vomit or fall asleep at your desk. All the bloody time!

(Got some anger issues here haha!)

Thanks for the opportunity to vent. I've grown tired of peoples ignorance 😢 Found the group "endo revisited" on Facebook a massive source of comfort and knowledge where all of the ladies understand and relate. Would've gone mad without them 😊

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So glad you like the group. x

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Be lost without it! If I'm querying my symptoms or have any concerns, I don't google them like I used to, I now just go straight to the group! Luckily I can search key words on the page and can guarantee that someone has already discussed said symptoms or questions and I'm instantly reassured. If it's something in particular I feel safe and comfortable enough to ask everyone on there what their thoughts and experiences are. I'm really grateful to have that source of information and support. Thank you x

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omg i too have people that think i'm all fixed. It's sooo bloody annoying!

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I get this a lot from everyone including my husband!

"We will cross that bridge when we come to stop stressing for no reason"

"You will be fine you complain too much"

"Aah yeh your endo is because of your heart condition you are always ill" 😡😡😡

"Go to bed you will be ok"

"My endo has flared up" no its your diet 😧😧

Oh and of course " doesn't matter if you can't have kids just count your other blessings" 🙄🙄

Feel so angry and stupid at times. It's like no one bloody understands!!!

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We understand try to talk here but I know what you mean especially since we expect family to understand . Hugs xx

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"Why don't you just take Advil to Tylenol?" I shoved my prescription for Naproxen in their face.

"I don't know how these things happen to you, you should use protection" because apparently my friend thought it was an std.

"Even when pain is a 8 or 9 you still gotta push"

My teacher in front of everyone in class after I came back from the washroom throwing up from pain in sat in my desk whimpering "At least I come to school when I'm sick" whilist he has a cold.

"Try to be positive"

My teacher "You still need to come to school even if your feeling a little sick"

"She's probably just doing it for attention"

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Does my head in all this attendance at crap . I don't agree sickness is not attending . It's a sad fact of life at the moment even in the work place they take this view. To me not attending is something you've chosen not to go to not been so ill you can't do it . Grrr makes me so mad 😡

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Sorry I misread the comment, j thought you meant I wasn't pushing hard enough to go to school.

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I think she is trying to say that some places make out that bad attendance is due to just not been arsed to go in and that they don't take into consideration that people like yourself cannot physically do it because you are too sick. I don't think she was trying to offend you in that comment, she was saying that work/schools should have sickness down in a different format rather than poor attendance

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Ohhh oops I misread it okay I should apologize.

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Haha :)

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I agree about that, my pronicipal kicked me out even though I had 2 doctors notes explaining pain, a nurse emailing him and 3 willing to talk to him on the phone about the condition I was in since he thought I was just avoiding school.

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"You aren't missing anything" - regarding dyspareunia

"Women have c-sections all the time and they're fine, why aren't you?"

I'm not even going to start on various doctor's comments.

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The doctors comments are horrible...

"Your pain is like a paper cut" umm no I play electric and acoustic guitar I know how those feel and guitar hands sting.

To my mom while my dr hands me a prescription "She's smart she'll figure it out"

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A paper cut?! I laugh so I don't cry...

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''You are always ill, if it is Endo that you have you would only be ill on your period''

''Everyone gets period pains, its part of being a women''

my personal favorite for those who are currently waiting a definite diagnosis ''well when you've had your op it will soon prove if you're ill''

Arent people great! :( x

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Thank you for all the replies ladies!

I am so sorry that you all have to go through this and the stupid remarks some idiots make!

So sad that there are so many!

At least we all know what we are going through and we can be there to support eachother xx

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The period pain thing perso nelly bugs me a lot . Ive had both my ovaries removed and my manager had negotiated that I can take unpaid leave because it's cyclical . He totLly ignores any info I try to give him to educate him lol

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I know what you mean hun. I remember going to see my GP to get some stronger painkillers due to having a flare up. He said it's not endometriosis pain because you aren't bleeding...

Also my younger sister has 2 children, another on the way and when i try to talk to her about my pain she just says that she knows the feeling. i'm like NO, YOU REALLY DON'T! I try to talk to my family about my endo but they just show me things on the internet about other people like, "oh this girl had an operation and shes cured now" or "this girl had a baby with endo" i'm like yeah i get that but everyone is different. i know they are trying to be positive for me but sometimes its annoying that they don't understand.

I wish there was something we could all do to raise more awareness about this. Shame we can't take over everyone's TV for an hour in the evening and explain it! haha! xx

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It easy to fix and it ain't easy to get a decent consultant/ surgeon half the time . I'm sure they are trying to cheer you up in their own way . And alot of people totally get it wrong even after they've been corrected. Don't get me on about hysterictomy is cute perceptions lol x

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Ahghh I meant it ain't easy to fix above bloody spell corrector c

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Ah man, I totally understand the family thing. My family haven’t got a clue. Despite me explaining a million times what endo is, how it affects me etc. My mum’s answer “just get a hysterectomy, that’ll sort it”. Erm no it won’t actually. I’ve had a few laps over the years, my family thinks I should be cured by now.

My work colleagues on the other hand are absolutely amazing. They have all tried to understand the condition and how it affects me. When I’m sat with my hot water bottle, they get it. They don’t say anything, they just bring me a cup of tea and tell me to just sit!

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'You should have a baby, that would get rid of it'

Wrong on so many levels, especially seeing as I'm single!

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When i last went to see the gynae, they said pregnancy helps endo...

I said yes but i'm not in a position to start trying yet and that is not the answer.

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I've heard of this being said to 12 year old girls, I was told it by a teacher at my school.

I'm only 17!!!

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Yeah I had a doctor claim having a baby would cure endo. IN 2015

And this after me saying I was celibate from the pain. It's like how am I supposed to get pregnant in the first place, dips#!*?

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And we have to be realistic as to how much we can cope with demands of raising a child if the endo comes back . I couldn't have done it I get too ill as it is !

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This is a very serious concern of mine as well. It's heartbreaking, isn't it?

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My brother just keeps saying and god bless him i know he doesn't mean it in a bad way but he just keeps saying "oh now you had your lap you can go back to work full time your better now!"

Or people in work txt and say "oh your off again? Is it still period pains?!"

urgh!

I was even told by a dr to have a baby as she didn't believe in ops or meds however at the time my tubes where blocked and stuck down the back of my womb?!

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Another one I had from a friend

"You can't be sick you're too pretty, stop complaing some of us have real problems"

I was so mad, don't judge a book by its cover, high estrogen in endo can cause so many issues.

Then I went to a pharmacy to pick up a prescription for more progesterone since my estrogen went up so I had to take 2 or I'd have a period and painkillers.

So I was telling my mom I had to take 2 because my estrogen was too high.

And then the lady who was a pharmacist said "Your lucky"

My mom replied with "The estrogen is the reason she's in so much pain."

And she said "But she's a real lady" and then proceeded to tell us she wished her daughter was like me.

Sometimes I just don't understand people's ignorance, I would've fought it but I was exhausted.

Has anyone got these comments?

I feel like people don't believe I'm sick because I look a certain way and I don't know why.

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Yep agree with all these so far . So tiring having to explain and even use diagrams . I find a good one is to say it can travel round your body it can be in your eyes heart intestines . I suppose people just arnt listening but I can't believe how Mis information so may are and annoyingly doctors even surgeons at times hugs xx

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Just a few that get to me ...

"you're just lazy"

"Are you feeling better now?" I know people mean well but it's really grating to hear 10 times a day.

"Don't worry you'll get better"

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I hear this all the time, it's like they think we're 100% if we're out but we're just trying to live.

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I was only diagnosed in December and I'm already fed up, I couldn't imagine how some of you guys are coping after years of it! I'm still signed off work until further notice because of complications with my laparoscopy and, but people are crappy!

'Oh, what are you like just not feeling well?'

'It's not that bad, it'll get better'

'Why are you so blunt, I haven't done anything wrong' oh sorry, kinda going through a crappy time at the moment.

'You're not messaging me back for hours, you're off work ill aren't you?' Yeah, kinda spending all day researching my condition 😂

Any tips on how to deal with this long term? X

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I just accept that they won't feel this kind of pain and if they did they wouldn't cope the way I would. Like we have super powers, we work / go to school and push in delibiating pain!

I'm 17 and passed a kidney stone (said to be as painful as labour) and I only asked my mom if I could go to the doctor because I felt something move down, I wasnt even crying.

Just recently I sprained an ankle and a year ago (I was in dance it happened a lot) if I got one I would scream and cry but this one felt weird but not painful.

I really do feel like if a regular person was hit with our pain just out of the blue they wouldn't cope, just think about that next time, your 6 could be someone's 10. 😂

As for symptoms I would reccomend making a post on how to cope.

Certain foods make feeteain people pain worse so you have to play around, I have no issues with meat or diary but if I eat soy I will have a period and I'm on 1 1/2 pills.

Try to take contraceptives so you don't cycle, that way the endo doesn't grow.

In the long run if you take painkillers, they become less effective and have side effects, I'm on none right now because I've been told Naproxen causes ulcers and other drugs are addictive.

Try natural remedies, I've heard of castor oil packs which 'may' separate adhesions (I haven't tried myself but I just made a castor oil and essential oil cream which makes my pain calm down) it has lavender, frankincense, lemon, geranium, and rosemary.

Anti inflammatory food, load up on fish and broccoli and start taking omega 3's. (I took omega 3's for years and I stopped a year ago and I think that's why I'm in pain, my first period was when I was 8.)

Hot water bottles/compresses

Dilute peppermint essential oil (contain methanol) in a carrier oil and put it in a roller that you can rub on yourself.

Epsom salt baths (contain magnesium plus help with constipation and hair and skin issues)

Hope these help😊

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hahahaha ALL of yours!!! i had it all and all of them makes me crazy mad ;-)

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I've had a few conversations with people about smear tests recently. They were telling a young girl that 'they were painless and you have nothing to worry about.' After biting my tongue for a while, I did say that's not actually true. Some people find it quite uncomfortable and painful. I then get laughed at and told it doesn't hurt. Although I don't want to worry anyone who's going for one, it really makes ne angry because obviously all I do to do is relax more. My pain is just me being tense!!!!Also my favourite one from my Dr (not consultant!!!) is have you thought about having a baby? It helps!!! 🤔

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Frequent remarks along the lines of "but if this [pain, bleeding, tiredness, etc.] is an ongoing thing why does it bother you? Wouldn't you be used to it?" Ah, yes, you're right, because if a struggle is ongoing it shouldn't be classified as a struggle anymore. Gee, if only you'd told me sooner. 😒

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‘But you had your surgery’. It’s not a bloody appendix.

There are were a few days when I started feeling really unwell at work and asked if I could home. I was offered to go for a walk. I am pretty sure if I had a cold and was sneezing I could just go home. Because it’s not visible with a naked eye it feels like people assume that it’s all in my head.

My friend recently realised that that lap is done with full anaesthetics. She said that she had a c-cection twice on nobody put her to sleep. Endo is such i minor thing, according to her, could probably be fixed by a dentist.

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" But you looked fine yesterday" irks me no end! Yeah, I looked fine today too while I was lying on the floor crying in too much pain to move, and I looked pretty fine when I came to work because I couldn't afford many more days off but sure, I was just pretending for the laughs!

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"It's part of being a woman"

"Oh you're taking the lift"

"You're young, time is on your side"

"Just take more painkillers / hormones"

"But you had your operation, why arent you better?"

"You are always asleep"

"It could be worse"

"Come on, my daughter is going to push a baby out of there next month. You should feel sorry for her instead" (said by a man)

And when doctors say "See you in 6 months" when you leave in tears.

We really should write a book! Reading these makes me so frustrated at people's ignorance but you guys are the only ones who truly understand

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I agree with so many of these you have all mentioned.

Worst one for me at the moment is..

When I slept in til 10am on my day off.. and my partner said ‘you wasted your morning, now you’ll have to play catch up’

I’d love to have done lots of things, I didn’t know the time, I was fast asleep!

I needed it.

I don’t think people realise symptoms can be constant and draining.

Good thread to start shazlovesevo! x

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Oh and then I was tired again by 3 and he said ‘you were asleep til 10 you can’t be tired’

🙄

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“If I was in pain and unwell like you, I’d be better within a week” too many people have said that!

Hospital “I am discharging you as we have given you oromorph and nothing else we can do”

Gp “I think the pain is psychological and you need anti depressants but keep taking painkillers ”

Specialist doctors “I am referring you back to your gp”

🙄

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You don't look ill. ( Hate that one)

I think you've got depression and you've had it since a teen ( gp had the cheek )

You've slept for 10 hours (well if you was me you'd wanna sleep for a day and no I didn't sleep for the whole 10 I was tossing n turning most of the night)

Awww you don't look well ( I hate that coming from ppl that already know the score I know I look like 💩you don't need to remind me)

YOUR NOT SICK YOUR JUST IN PAIN (bloody surgeons at surgical assessment while I'm crying in agony )

Are you sure your not having a miscarriage ( when I'm in fetal position ovulating )

Some right annoying comments ppl do make. I could throwv something at them at times.

.💗🤗😘

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