Over opinionated people : Why do people who... - Endometriosis UK

Endometriosis UK

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Over opinionated people

Emma5397 profile image
18 Replies

Why do people who havent experienced endo or men think they have they right to give their opinion on what you should and shouldn't be doing. Iv just had my boyfriends father tell me not suggest but tell to go to work cause it's only a stomach ache!! Iv been in bed all day due to pain, I'm absolutely shattered and drained and get told I still need to go to work...he did get out his place don't worry. Just feels like the only ones that understands and sympathies are people on this group! I don't no what I'd do without

Rant over 😂

Much love

Emma xx

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Emma5397 profile image
Emma5397
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18 Replies
Jenjen87 profile image
Jenjen87

To him🖕🏻😂. We understand here because we experience the same struggles Hun. It’s easier too, however it’s hard to relate to any illness if someone hasn’t experienced it. This seems to be this persons problem. And people as a whole, not in a bad way.

That does not negate the fact that someone can be so blazay about something they know nothing about, this is ignorance and rude. You need support now.

I have found most important so far is realising the ones that don’t know what we’re going through but try to understand. For the first time today I told my boyfriend how low I actually was, my body had given up badly in the end and so had my head, I’d been sucked of life and fun, I also thought I was a looney because of all he misdiagnosis. I didn’t want to be here any longer.

The people who can empathise with us and care are the ones to keep close❤️. Four people who I can genuinely say out of all my circles are actually caring people and will support. Read up on it etc. This is who I want close.

Keep us and them close beaut and don’t worry yourself on the assholes😂😊. Hugs❤️

Emma5397 profile image
Emma5397 in reply to Jenjen87

I really wanted to! I wished it was just a stomach ache lol. Thank you though! Hugs back❤️ stay strong and message me if you ever need to vent xx

Jenjen87 profile image
Jenjen87 in reply to Emma5397

Thank you beaut, same to you ❤️.xxxx

AllWeNeedIsluv profile image
AllWeNeedIsluv

Do you know what I say when I get comments Like that. I say. Imagine your balls are being twisted or you've got some kind of little knives stabbing them. Then tell me it's nothing. Idiots. Winds me up people that have no clue passing comments like that 💗😘🤗 hope your ok hun xx

Emma5397 profile image
Emma5397 in reply to AllWeNeedIsluv

Haha that's brilliant! I'm so using that next time! And I know it's so Annoying! And thank you I hope your okay to😘

Jenjen87 profile image
Jenjen87 in reply to AllWeNeedIsluv

I love this 😂❤️😂

NH88 profile image
NH88 in reply to AllWeNeedIsluv

My mum stated that it was like watching me go through a really bad labour each month. The sleepless nights blending into day. The sickness and headahes. The fever....who knew you could have a fever with it? And the pain. Like someone has got a metal rake and is clawing your insides! The heaviness you feel and the upset of having no control. Blacking out is bad...even when you're already lying down....still don't make it easier to deal with.

Unless he has gallstone (apparently they're similar to labour pains) has weights attached to his nether regions, or goes to Amsterdam and has the machine that simulates labour or had a metal rake gouging out his insides then im not sure people like that will ever get it.....unless there is more infomation available. (even then there are still ignorant ppl.)

Keep your head up. You're not along. Its not in your head. And the fact that your talking about it is a good step. Xx

Emma5397 profile image
Emma5397

Yeah totally agree with you xx

MMich15 profile image
MMich15

Ooooh I feel you. Just last week my boss said to me "oh now I know how you must feel because I woke up at 3am last night, I'm so tired"... keeping in mind I haven't had a restful sleep for last 3-4 months courtesy of a 12cm endometrioma cyst that likes to keep me up at night. Who knew one early wake up could make someone have an ounce of sympathy. Obviously he cannot "understand" or sympathise as he hasn't gone through it, but like everyone else has said, ignore those people who don't matter. Those who do won't judge you or ask you to prove you're ill, they'll just be there for you. X

3caramel7 profile image
3caramel7

It reminds me of alot of Sickle Cell Anaemia. For years the amount of pain people suffered was ignored. People would turn up to A +E needing things like morphine and people would be accused of being drug addicts and wanting a fix etc. Now there are clinics, support groups etc and when people now turn up to A + E people are taken seriously

dren with cancer yet the gap in terms of funding and research is enormous.

Endometriosis is going down the same path.When I got diagnosed back in 1989, there was nothing in terms of support groups, funding, research etc. I too was told that the pain etc was all in my head etc. After my lap, he apologised. He said that I didn't fit the profile. I was too young, black and hadn't had any children! I was also told that sex would be painful and that I would never have children.Those comments would, although I wasn't aware, would unconsciously affect my future relationships for the rest of my life! I too was told that the pain was in all my head etc

But things have changed and are slowly, very slowly getting better.Future wise I am looking forward to Artificial intelligence and machine learning in terms of diagnosis.This is a chronic disease that has been around for years, it is believed Saint Hildegard of Bingen in the 11th Century suffered from this condition!

The problem with alot of male Doctors is that they obviously never had a peroid and if they have never had a friend or relative who have had this disease unfortunately alot of them simply don't care! I am probably wrong saying this, but it seems that Doctors who don't understand a condition or know of a condition seem to put it back and blame the patient! Oh its all in your head, your imagining it. Oh its not that bad etc etc. Many of us have all been there! Unfortunately.

Like I said Sickle Cell previously , is where we are now. We are getting there.

NH88 profile image
NH88 in reply to 3caramel7

Its not just male doctors. Infact i found the female doctors weren't very helpful, they had an attitude of...your a woman this is qhat your body does...i have to deal with it too (sure you do) so gwt on wih it.

In fact the 1st private consultant i went to see was a female...she was no help. Just had same attitude as the gp. Worse in fact as she gave me a medical exam and told me "you dont have endo....i can move your womb"

WTH!!!!

In fact the best consultant i had was a male. He studies the disease so was not dismisive at all.

The whole thing needs more awareness to it. There are loads of women who dont even know why they are suffering from it cos there told its normal!!

Professionals need to be awarw of it aswell. GPs especially as they are our 1st port of call.

M1ssy profile image
M1ssy in reply to 3caramel7

I hear you, as my GPs and Consultants simply didn't take my condition seriously enough and, other than the symptoms "being in my head" they also said "you're one of the unlucky ones and just get very painful periods"...it took 23 years for them to diagnose my condition, and which unfortunately came at a time when it was too late to freeze my own eggs. I've been refused NHS funded IVF which is very unfair as their delay has caused my current position. Had I known earlier I would have had children earlier in life. Due to all the stress and 2 x laparoscopy my AMH levels went from 11.9pmol to 1.4pmol...I tell every young woman with period pains to listen to their body, their gut instinct, do some research and get 2nd and 3rd opinions if need be. I listened to my Dr rather than myself - I knew something other than period pains ravished my body on a monthly basis.

You've done your research! I must look up Saint Hildegard of Bingen! And yes, I'm well happy that more Drs are becoming more aware of Endometriosis and Adenomyosis...it's been a long time coming!

Lulububs profile image
Lulububs

I seem to be lucky in that my gp had endo and a early hysterectomy coz of the pain so she gets it ... i also have a husband whose amazing coz his mum was same so he lived with it all his life and he is so good, on day i come on he goes get me a hottie, transexamic acid, cocodamol and naproxen and he knows that me in bed till i can emerge!!! Like the creature from the black lagoon....

I have had consultants that are utter 💩 and also my dad has said amazingly unbelieveable things like " hmmm she not up yet" ... " oh she moody she on her period AGAIN"!!!

Oh the joy...

I told him let me kick u in the nuts really hard and see how u feel for next three or fours days!!!

It hard to find people that understand but there are amazing people that id they love u or understand they will do everything they can to make ur life easier and if they dont u know what u got to do at that time of month AVOID THEM

Emma5397 profile image
Emma5397 in reply to Lulububs

Yeah definitely, I did stand up to my father inlaw. It wasn't the first time he's given his opinion on what I'm going though, but it definitely was the last lol. But I'm glad your getting the support you need, it's a lot easier xx

Lulububs profile image
Lulububs in reply to Emma5397

Yes it does but it still hard after putting up with it for 25 years (43 now) it so tiring...

The only good thing is with being older u learn the things to make it easier on urself and silly little things that ease the pain and pmt ...

Hope u feel better xxx

If it helps i have started using transexamic acid and it makes me more functional every month, wished id found it years ago....

NH88 profile image
NH88 in reply to Lulububs

I was given that and mefanamic acid after the paracetamol and ibuprofen stoppedworking at 15 years old.

It worked for a bit butmy body quickly became adapted to it and it didn't work anymore

Lulububs profile image
Lulububs in reply to NH88

Yeh unfortunately i have gone up to cocodamol now 30/500 mg and naproxen, hot water bottle and brandy.... that only things that get me through it all

NH88 profile image
NH88 in reply to Lulububs

I cant take that i get a rather unpleasant after effects. I feel like im in a fog.

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