just wondering what you tell people when ... - Endometriosis UK

Endometriosis UK

70,640 members52,124 posts

just wondering what you tell people when they ask whats wrong

worth71 profile image
6 Replies

i think i've asked similar before but again just wondering what you tell people when they ask you whats wrong - i had bad symtoms for 5 years, that have steadily got worse, i've had various scans and things but i cannot have a lap until i lose a bit more weight, which i accept and understand the reasons why, my gp is convinced it is endo but i do not feel i am entitled to say i have it without a diagnosis - i'm a mobile hairdresser, but up until 3 years ago i was salon based, i think my symptoms seem worse since i became mobile, and i put that down to lack of proper equipment whereas in a salon the chairs raised and lowered, hair could be washed at the back basins, whereas now i seem to bent over doing hair as their chairs are low, or washing hair over the bath, it is sometimes criplling - i try my best not to be off sick, the way in which i have managed to do this though is by dramatically cutting back my hours, from a 5-6 day week 45-60 hours, to 2-3 days now doing 8-12 hours - but there are still days, especially when on my period that i am just not physically able to go out due to the pain, and if i take pain killers then i can't drive (i'm rubbish with tablets they affect me hugely) but when i talk to my customers about things, as you do, some seem to know all about endo 'oh yes bad periods yes i get that sometimes' or 'yes but its treatable and cureable' yes it might be treatable but i'm not being treated for it yet - they also fail to understand as to how one day i can be laid up, but the next be out and about feeling ok ish - i never have a day without some pain, but its what i call my everyday dull, aching, tugging pain, its always there, i dont even remember a time without it, but then there are those days that are unbearable, the ones where you just need to curl up with your hot water bottle - sorry didn't mean to ramble on again xxx

Written by
worth71 profile image
worth71
To view profiles and participate in discussions please or .
Read more about...
6 Replies
worth71 profile image
worth71

i also meant to put, that there are some people, especially older generation and men that i don't feel i can discuss my womens issues with, or that they don't want to hear all about it but yet they want to know why i wasn't there to do their hair - the oap's.....'endo what? we didnt have that in my day we just got on with it' xx

limbiloo83 profile image
limbiloo83

Hey love,

It is rather difficult trying to explain it to some people the best way I could describe it was " i have periods the normal way a woman does, but at the same time that is happening in different parts of my body ie bowel fallopian tube etc" The best way is to try and describe it to them as dummyfied as possible without sounding sarcastic to them.

Hope this helps hun xx

worth71 profile image
worth71 in reply to limbiloo83

thank you - yes its good to hear how others word it, especially though for me whilst i am not diagnosed with anything yet, yes they suspect its endo but i feel i'm a bit in limbo at the moment until i get my lap and they say yay or nay - i still try to tell myself that it won't be endo though lol xxx

littlestar profile image
littlestar

I have a simular problem.At work I have customers verbally abusing me sometimes as on a bad day I can,t always smile.I am waiting for a answer as to wether I can have a hysterectomy and am in constant pain due to adhesions,endo in back,and on my bladder.People I work with are no better,I recently had a colleague in her 60,s say,"do u ever have a good day2?"Well actually no I don,t at the moment.

Tendo profile image
Tendo

I explain that it's bits of the lining of the womb growing outside the womb in the pelvic area, which can touch nerves, causing pain.

If it's elderly men who ask, I'd just tell them that it's women trouble, and leave it at that unless they ask.

I always find that it's better to keep the explanation short and to the point, and if the person asks questions, then expand your explanation.

Miwa profile image
Miwa

Hello,

I thought you might be interested in this good piece on "mentionitis" regarding educating others on endo.

endometriosis.org/news/opin...

x

You may also like...

Lap on Monday - what to tell people?

symptoms: Painful periods where I can't even walk Back pain (throbbing lower back before......

Do you ever just wonder what it would actually be like to not feel pain and exhaustion EVERY DAY!?

about my 2 washing baskets of clean washing which has just been shoved in for several days with me...

What remarks do people say that annoy you?

and people say, oh you haven't done anything all day!😒🖕 When I talk about my endo to someone and...

What do I say to people who ask?

but I do not think they understand it, oh does that mean period pains? Will you have a...

Just wondered what pain meds everyone is prescribed for Endo? and advice on difficult GP?

Iv been struggling to get some pain relief latly well for last 3 months to be honest, its really...